tag:blogger.com,1999:blog-6717302443190768172024-03-12T19:42:57.992-07:00Modeling Changeisabel jordanhttp://www.blogger.com/profile/01087403575321827122noreply@blogger.comBlogger31125tag:blogger.com,1999:blog-671730244319076817.post-32204134850176792192022-04-29T11:13:00.004-07:002022-04-29T16:47:26.899-07:00The hard decisions are often the right ones<div><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRkzRm0KmNumNeslpZgX_moB9_jFm5934BnihrG0gdK5_cnpb8ZPBzO_RDA1YU52tYGkoFYWt51ZenmEo-aK96cqs8AdFHlKlQXFo34WMMVDLbcaqmHexlScw1kddq_TGoMCjN_hAMyaBOFKdZpKsqNMjckNn-BaKUElA9WnZ5gLOWImET3EdUYUD0PA/s3024/mask.jpeg" style="margin-left: 1em; margin-right: 1em;"><img alt="white KN95 mask on a black background" border="0" data-original-height="3024" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRkzRm0KmNumNeslpZgX_moB9_jFm5934BnihrG0gdK5_cnpb8ZPBzO_RDA1YU52tYGkoFYWt51ZenmEo-aK96cqs8AdFHlKlQXFo34WMMVDLbcaqmHexlScw1kddq_TGoMCjN_hAMyaBOFKdZpKsqNMjckNn-BaKUElA9WnZ5gLOWImET3EdUYUD0PA/w320-h320/mask.jpeg" width="320" /></a></div><br /> <p></p><p> I<span style="font-family: inherit;">'m going to start this with some facts:</span></p><ul style="text-align: left;"><li><span style="font-family: inherit;">The COVID-19 pandemic is not over</span></li><li><span style="font-family: inherit;">Everyone is at risk, but especially those of us with chronic illness, disability, and pre-existing conditions</span></li><li><span style="font-family: inherit;">The risk is not just of acute infection but of long covid. Those of us who already experience chronic illness have a unique window on what that means in terms of impact on our lives, how the world treats us, and how difficult it is to get good care.</span></li></ul></div><p><span style="font-family: inherit;">For the past year I've been on the steering committee for a health care quality improvement conference that I've been involved with in some form or other for about the past six years. To be honest, it was the first conference I attended as a patient partner where I really felt like my participation was welcomed, where I was making a difference, where my lived expertise was valued. I've lauded the organization and the conference as an example of how to follow and surpass the values of the #PatientsIncluded Conference Charter. I felt safe. It was an honour to be chosen to be on the steering committee when I applied. Even though the patient partner position wasn't compensated (something I fiercely advocate for), I felt it was important to be there, on the inside, talking about how to even further bring forward lived expertise and lower barriers, including changing policy on compensation.</span></p><p><span style="font-family: inherit;">The conference is in one month. A week ago today I emailed a letter of resignation to the steering committee, including the representatives from the organization. This was an incredibly difficult and sad decision.</span></p><p><span style="font-family: inherit;">The decision was made some time ago to shift into an in-person conference with no hybrid version. At the time, there were still mask requirements in our province. When these requirements were dropped, I brought up at meetings and through emails the importance of keeping mask requirements at a health care conference - especially one that welcomed and purported to create an inclusive, barrier-free environment for patient partners attending. When it became clear last week that this accommodation could not be made, I had to make the decision that I could not attend in order to keep both myself and my family safe and made the further decision to resign from the steering committee. I'm posting the full text from my resignation letter below.</span></p><p>
</p><p class="MsoNormal" style="margin-left: 40px; text-align: left;"><span lang="EN-US" style="font-family: AppleSystemUIFont; mso-bidi-font-family: AppleSystemUIFont;">22 April 2022</span></p><div style="margin-left: 40px; text-align: left;">
</div><p class="MsoNormal" style="margin-left: 40px; text-align: left;"><span lang="EN-US" style="font-family: AppleSystemUIFont; mso-bidi-font-family: AppleSystemUIFont;"> </span></p><div style="margin-left: 40px; text-align: left;">
</div><p class="MsoNormal" style="margin-left: 40px; text-align: left;"><span lang="EN-US" style="font-family: AppleSystemUIFont; mso-bidi-font-family: AppleSystemUIFont;">To the QF22 Steering Committee Members,
and to the BSPSQC staff,</span></p><div style="margin-left: 40px; text-align: left;">
</div><p class="MsoNormal" style="margin-left: 40px; text-align: left;"><span lang="EN-US" style="font-family: AppleSystemUIFont; mso-bidi-font-family: AppleSystemUIFont;"> </span></p><div style="margin-left: 40px; text-align: left;">
</div><p class="MsoNormal" style="margin-left: 40px; text-align: left;"><span lang="EN-US" style="font-family: AppleSystemUIFont; mso-bidi-font-family: AppleSystemUIFont;">It is with a heavy heart that I write
this email to submit my resignation from the BSPSQ Quality Forum 22 steering
committee and to recommend that QF22 remove its self-accreditation as a
#PatientsIncluded conference.<span style="mso-spacerun: yes;"> </span></span></p><div style="margin-left: 40px; text-align: left;">
</div><p class="MsoNormal" style="margin-left: 40px; text-align: left;"><span lang="EN-US" style="font-family: AppleSystemUIFont; mso-bidi-font-family: AppleSystemUIFont;"> </span></p><div style="margin-left: 40px; text-align: left;">
</div><p class="MsoNormal" style="margin-left: 40px; text-align: left;"><span lang="EN-US" style="font-family: AppleSystemUIFont; mso-bidi-font-family: AppleSystemUIFont;">It has been a valuable experience
working with you all for the past year to make Quality Forum 22 (QF22) happen.
I was so happy to be one of the two patient partners chosen to be on this
committee.</span></p><div style="margin-left: 40px; text-align: left;">
</div><p class="MsoNormal" style="margin-left: 40px; text-align: left;"><span lang="EN-US" style="font-family: AppleSystemUIFont; mso-bidi-font-family: AppleSystemUIFont;"> </span></p><div style="margin-left: 40px; text-align: left;">
</div><p class="MsoNormal" style="margin-left: 40px; text-align: left;"><span lang="EN-US" style="font-family: AppleSystemUIFont; mso-bidi-font-family: AppleSystemUIFont;">I have previously expressed my concern
we are not planning for mandatory masking at QF22 because of the risk it poses
to vulnerable patient partners. While I have been advised by the Council masks
will be recommended, they will not be required which means patient partners and
other conference attendees who are vulnerable will have to risk their own
health, or the health of vulnerable family members to attend the event.<span style="mso-spacerun: yes;"> </span></span><span lang="EN-US">Other medical
conferences have made the decision to enforce masking, but here the decision
here has gone the opposite way.</span></p><div style="margin-left: 40px; text-align: left;">
</div><p class="MsoNormal" style="margin-left: 40px; text-align: left;"><span lang="EN-US" style="font-family: AppleSystemUIFont; mso-bidi-font-family: AppleSystemUIFont;"> </span></p><div style="margin-left: 40px; text-align: left;">
</div><p class="MsoNormal" style="margin-left: 40px; text-align: left;"><span lang="EN-US" style="font-family: AppleSystemUIFont; mso-bidi-font-family: AppleSystemUIFont;">As a patient partner on this steering
committee, part of my role includes speaking up to do things in ways that are
both safe and equitable.<span style="mso-spacerun: yes;"> </span>Too often,
patient partners do not know that they have accessibility rights, or that there
are better ways of doing things. Equity means giving opportunity to those who
have the most barriers. In this case, those who have the most barriers are
those who have the most vulnerability to COVID-19.</span></p><div style="margin-left: 40px; text-align: left;">
</div><p class="MsoNormal" style="margin-left: 40px; text-align: left;"><span lang="EN-US" style="font-family: AppleSystemUIFont; mso-bidi-font-family: AppleSystemUIFont;"> </span></p><div style="margin-left: 40px; text-align: left;">
</div><p class="MsoNormal" style="margin-left: 40px; text-align: left;"><span lang="EN-US" style="font-family: AppleSystemUIFont; mso-bidi-font-family: AppleSystemUIFont;">As a vulnerable person who recognizes
the risk of airborne transmission, of long-covid, as a member of a household
who has other family members who are vulnerable as well, my disability
accommodation requires mandatory masking.<span style="mso-spacerun: yes;">
</span>I am unable to attend QF22 – the conference I have spent the past year
helping to organize, as my disability accommodations are not being met, nor are
those who fall into the same risk category as myself. Consequently, QF22 no
longer meets clause 4 of the Patients Included Conference Charter. </span></p><div style="margin-left: 40px; text-align: left;">
</div><p class="MsoNormal" style="margin-left: 40px; text-align: left;"><span lang="EN-US" style="font-family: AppleSystemUIFont; mso-bidi-font-family: AppleSystemUIFont;"> </span></p><div style="margin-left: 40px; text-align: left;">
</div><p class="MsoNormal" style="margin-left: 40px; text-align: left;"><span lang="EN-US" style="font-family: AppleSystemUIFont; mso-bidi-font-family: AppleSystemUIFont;">Patient Partnership requires hard work
in order to be diverse and equitable. My late father once told me that if it
feels like the decision I need to make is really hard, it’s probably the right
decision. Requiring masks would have been a hard decision. I imagine removing
#PatientsIncluded designation will be a hard decision. Writing this letter was
a hard decision.</span></p><div style="margin-left: 40px; text-align: left;">
</div><p class="MsoNormal" style="margin-left: 40px; text-align: left;"><span lang="EN-US" style="font-family: AppleSystemUIFont; mso-bidi-font-family: AppleSystemUIFont;"> </span></p><div style="margin-left: 40px; text-align: left;">
</div><p class="MsoNormal" style="margin-left: 40px; text-align: left;"><span lang="EN-US" style="font-family: AppleSystemUIFont; mso-bidi-font-family: AppleSystemUIFont;">I think about my dad’s words a lot. I
try not to run away from the hard decisions.</span></p><div style="margin-left: 40px; text-align: left;">
</div><p class="MsoNormal" style="margin-left: 40px; text-align: left;"><span lang="EN-US" style="font-family: AppleSystemUIFont; mso-bidi-font-family: AppleSystemUIFont;"> </span></p><div style="margin-left: 40px; text-align: left;">
</div><p class="MsoNormal" style="margin-left: 40px; text-align: left;"><span lang="EN-US" style="font-family: AppleSystemUIFont; mso-bidi-font-family: AppleSystemUIFont;">Wishing you all the best in your future
endeavours,</span></p><div style="margin-left: 40px; text-align: left;">
</div><p class="MsoNormal" style="margin-left: 40px; text-align: left;"><span lang="EN-US" style="font-family: AppleSystemUIFont; mso-bidi-font-family: AppleSystemUIFont;"> </span></p><div style="margin-left: 40px; text-align: left;">
</div><p class="MsoNormal" style="margin-left: 40px; text-align: left;"><span lang="EN-US" style="font-family: AppleSystemUIFont; mso-bidi-font-family: AppleSystemUIFont;">Isabel Jordan.</span></p>
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{page:WordSection1;}</style><span style="font-family: inherit;"></span></p>isabel jordanhttp://www.blogger.com/profile/01087403575321827122noreply@blogger.com0tag:blogger.com,1999:blog-671730244319076817.post-8632381056402486972021-03-15T14:03:00.003-07:002021-03-15T14:03:38.957-07:00Rare Disease Day 2021 - Reflections on a year like no other<div style="text-align: left;"><span style="font-size: small;">Early this year I was asked by Dr. Christopher McMaster, Scientific Director of the <a href="https://cihr-irsc.gc.ca/e/13147.html" target="_blank">Canadian Institutes for Health Research Institute of Genetics</a> (CIHR-IG) if I would consider writing a guest editorial for the CIHR-IG February newsletter. I sit on the Institute's Advisory Board, I both live with a rare disease and am the parent of a youth with rare disease. Dr. McMaster wanted to give up his usual space in the newsletter to somebody from the community on what is regularly considered 'rare disease month'. I was honoured to pen my thoughts on rare disease, disability, the impacts of COVID, and working with the research community. You can see the original post <a href="https://suivi.lnk01.com/v/443/bd7f1e49d6d0a1d9a053d7d2deb6bcc6b483a8de64f605ba" target="_blank">here</a>, along with some other great content and information on the great work that the CIHR-IG and its members are doing. If you'd like to subscribe to their newsletter click <a href="https://dal.cihr-ig-irsc.ca/newsletter" target="_blank">here</a>.<br /></span></div><div style="text-align: left;"><span style="font-size: small;"><br /></span></div><div style="text-align: left;"><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXXjI0LztLKaYCmln3-RdusxH42LvS1TuupbzTYgdOOe0omkA4zgot5TD7F-A8tpVN4ZsRpTtNe_yyABtpvJzzMBPqgegpdMbSRlvLDyLHYlCP-jwFT2XSoUVH2m2P2kdUBOGQ0fDWw6I6/s2048/medical+monitor+standby.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="a wall in an ER bay. a monitor is on standby. there are a variety of medical monitors and tools" border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXXjI0LztLKaYCmln3-RdusxH42LvS1TuupbzTYgdOOe0omkA4zgot5TD7F-A8tpVN4ZsRpTtNe_yyABtpvJzzMBPqgegpdMbSRlvLDyLHYlCP-jwFT2XSoUVH2m2P2kdUBOGQ0fDWw6I6/w240-h320/medical+monitor+standby.jpg" width="240" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><br /></td></tr></tbody></table><br /><span style="font-size: small;"><br /></span></div><p style="line-height: 1.2; margin: 0px; text-align: left; word-break: break-word;"><span style="font-family: inherit; font-size: small;"><b>There’s a special poignancy to Rare Disease Day this year.</b>
This time last year, we were just beginning to see that there was a
virus of concern spreading around the world, but it was only in March,
after Rare Disease Day, that it became clear that we were looking at a
global pandemic.</span></p><span style="font-family: inherit; font-size: small;">
</span><p style="line-height: 1.2; margin: 0px; text-align: left; word-break: break-word;"><span style="font-family: inherit; font-size: small;"><span>This
past year has been especially difficult on the rare disease community.
Many of us have health or lifestyle risks because of our rare diseases
and disabilities that make us particularly vulnerable to COVID-19.
Because of this, we are particularly stringent with our isolation
protocols. It is a difficult and lonely time for many in our community.
With a lack of security in knowing how much risk we have, we default to
maximum safety protocols for ourselves and our families.</span></span></p><span style="font-family: inherit; font-size: small;">
</span><p style="line-height: 1.2; margin: 0px; text-align: left; word-break: break-word;"><span style="font-family: inherit; font-size: small;"> </span></p><span style="font-family: inherit; font-size: small;">
</span><p style="line-height: 1.2; margin: 0px; text-align: left; word-break: break-word;"><span style="font-family: inherit; font-size: small;"><span><b>The nature of rare disease means that many of us have always lived with uncertainty.</b>
The uncertainty of pandemic times are not new to us. We don’t know how
we’ll react to new therapies, medications, and to other conditions such
as novel viruses. We lack the decision aids that let us take calculated
risks, and in their absence, we can only increase our vigilance. It’s
exhausting – not just because of the mental gymnastics involved in
trying to make good decisions, but also in trying to explain to others
just why we need to be so careful in our risk management.</span></span></p><span style="font-family: inherit; font-size: small;">
</span><p style="line-height: 1.2; margin: 0px; text-align: left; word-break: break-word;"><span style="font-family: inherit; font-size: small;"> </span></p><span style="font-family: inherit; font-size: small;">
</span><p style="line-height: 1.2; margin: 0px; text-align: left; word-break: break-word;"><span style="font-family: inherit; font-size: small;"><span>As
I read the very COVID-19-focused news, so many articles describe the
mental-health toll that living with uncertainty has taken on the general
population, and to "hang in there" because, with vaccines being
deployed, we can get back to normal. Meanwhile, for myself and my
community, this uncertainty is our commonplace. Our normal, will always
be uncertainty. It has been my life as a parent for the past 18 years.
Where is our vaccine against uncertainty?</span></span></p><span style="font-family: inherit; font-size: small;">
</span><p style="line-height: 1.2; margin: 0px; text-align: left; word-break: break-word;"><span style="font-family: inherit; font-size: small;"> </span></p><span style="font-family: inherit; font-size: small;">
</span><p style="line-height: 1.2; margin: 0px; text-align: left; word-break: break-word;"><span style="font-family: inherit; font-size: small;"><span><b>I, like many in our community, look to research as a potential means of improving our lives.</b>
What we lack in information about our own diseases, our own bodies,
could be alleviated through research into rare disease – but not
research in silos; research that is co-led by patient partners. We know
the challenges that we face and where focus could have the most
potential at improving our lives. Research needs to have priorities and
goals aligned with the lived experience expertise of the communities it
serves so that scarce research funds are effectively used for maximum
effect.</span></span></p><span style="font-family: inherit; font-size: small;">
</span><p style="line-height: 1.2; margin: 0px; text-align: left; word-break: break-word;"><span style="font-family: inherit; font-size: small;"> </span></p><span style="font-family: inherit; font-size: small;">
</span><p style="line-height: 1.2; margin: 0px; text-align: left; word-break: break-word;"><span style="font-family: inherit; font-size: small;"><span>The
rare disease community looks to the research community to partner with
us so that we can have the best outcomes and gain new insight on how to
live well with our rare diseases and disabilities. Perhaps, now that
we’re almost a year into a pandemic, those not impacted by rare disease
themselves have gained an understanding of just how exhausting living
with health uncertainty can be. Perhaps this too will fuel more research
for the rare disease community.</span></span></p><p><style>@font-face
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{page:WordSection1;}</style></p>isabel jordanhttp://www.blogger.com/profile/01087403575321827122noreply@blogger.com1tag:blogger.com,1999:blog-671730244319076817.post-82858640181485598632020-04-05T11:38:00.000-07:002020-04-07T12:46:35.581-07:00Out, damned spot! Out, I say! or trying to wash away the fear<br />
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<i>It’s hard to know just what others may be going through at
any time. That’s never been more true than now.</i></div>
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<tr><td class="tr-caption" style="text-align: center;">Image caption: white porcelain sink with soap suds at bottom. Soap dispenser on right. Cup on left</td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<br /></div>
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I stand at my bathroom sink and take a deep breath. My shoulders
relax – just a little bit. I turn on the water to hot – uncomfortably so, probably.
We have an ‘on-demand’ water heater downstairs and it will take a while for the
warm water to wind its way through the system and get to the faucet in front of
me. I notice that the soap dispenser is low. So right now the ritual of washing
my hands has an added step. I open the dispenser and fill it with the soap that
will let me do what I need to do.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I fill my hands with soap. I’ve resisted the urge, so far,
of taking off of my rings, my watch, my bracelet, of pulling up my sleeves past
my elbows, and scrubbing all the way up to my forearms. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It’s been so long since our son was in the PICU. He was so
small, so vulnerable, and I remember the nurses there admiring my scrub up technique.
In order to enter the PICU, we had to go to the wash station and wash our
hands. There were instructional cards there that I looked at as I washed my
hands. I remember feeling helpless then too, anxious, and afraid. And so often,
when I feel that way, ritual, whether useful, or even helpful, helped my brain keep
the panic at bay. I scrubbed my hands, my fingers, my palms, my arms back then,
as if by doing that I could somehow protect him, as if that would help him
heal, help him accept his bone graft, help him breathe. Washing my hands became
a moment of peace.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We eventually came home with wound care to take care of and the
strict hand washing needed to continue. His safety was dependent on my
diligence. And somehow, I think in my mind, everyone’s safety was dependent on
my handwashing. My peace became dependent on my handwashing. So, the ritual of
handwashing stayed. That momentary peace, that minute of control I got at the
sink, stuck. And it was hard to let go of. It took therapy. It took years. And
it took intent. It. Was. Hard. But I did it. Yay me.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And now here we are. And here I am pretty much engulfed in
panic and anxiety all the time. I find myself feeling completely out of control
in an environment where we’re told that washing our hands is our best defense. I
think you can see where I’m going. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Back at the sink. The water is running. The soap is in my
hands and first I spread it on my palms, then I scrub each of my thumbs, then my
fingers. I make sure I go back to my thumbs, my palms and the back of my hands.
I don’t need to sing a song once or twice. I know I’m scrubbing long enough. I
make sure I scrub my nails. In between my fingers. My thumbs again. I think
about taking off my rings, my watch, my bracelet. I really want to. But I don’t.
I haven’t yet. While I’m washing my hands my brain is quiet and I like that. I
finally think I should probably stop. I rinse. Then rinse again. Check for
soap. Given another rinse. Go to a towel and wonder if I should change it yet.
Dry off each finger. Think I need to stop doing this so often. But that moment
of quiet – I need it.</div>
<div class="MsoNormal">
And I figure, out of all the maladaptive coping strategies I’ve
had throughout my life, this one, at least might keep my family safer. I wonder
what will happen when it’s not so necessary? Will I be able to stop again?</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i>Before the video call starts with your colleagues, your
friends, your family, there’s no knowing what was happening on the other side
of the screen in order to prepare to virtually face the world. These are
difficult times, and what they little bits of mental flotsam that return as a
result can quickly become overwhelming. I can’t say this enough – now is the
time to give everyone, including ourselves, as much compassion as we can
muster.</i></div>
<div class="MsoNormal">
<br /></div>
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{page:WordSection1;}</style>isabel jordanhttp://www.blogger.com/profile/01087403575321827122noreply@blogger.com5tag:blogger.com,1999:blog-671730244319076817.post-67750090667281618032019-04-13T18:39:00.001-07:002019-04-13T18:39:35.572-07:00Can you see me?<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfXW9Pz4MkGBDZFcJHHTMiKlvQRecaRiTOQ9n5u7Ocm3UQIOBM7TcLYf3066r3movH6C1AZn6FHJtrYpItXJSqqfchcW6MXsJjvAAxkX1V7To1zgS8GuShOK-362JmPLeRJ88o2gufzGM9/s1600/walking+in+the+woods.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfXW9Pz4MkGBDZFcJHHTMiKlvQRecaRiTOQ9n5u7Ocm3UQIOBM7TcLYf3066r3movH6C1AZn6FHJtrYpItXJSqqfchcW6MXsJjvAAxkX1V7To1zgS8GuShOK-362JmPLeRJ88o2gufzGM9/s320/walking+in+the+woods.jpeg" width="256" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="color: #0000ee;"><u>Photo by Sue Robins</u></span></td></tr>
</tbody></table>
<div style="text-align: center;">
<br /></div>
Thank you Tammie. I needed to start with that. I need to start with thanking a clinician that has been a part of our medical team for the past 2 years or so. I say ‘our’ team because even though she’s our son’s pediatrician, she has known that we are a family and needed her support together. Yesterday was her last day, and to be completely honest, I don’t know what we’ll do without her.<br /><br />I’ve often spoken at conferences about what it means to curate a good health care team, about what it means to find clinicians that enter into a truly partnership relationship with us. Having a kid with a rare disease has meant navigating undiscovered waters with charts marked only with ‘Here There Be Dragons’. If we find a good clinician we together fill in some of those dragon infested waters with information we can act on.<br /><br />I’ve been the ‘good patient/caregiver’ – gone to every appointment in my smart clothes with my notebook and pen, questions at the ready, research done. We’ve presented well, but not too well. We’ve done the dance and negotiated relationships so as to maximize benefit to our son’s healthcare. It’s been 16 years of doing that. But all of this negotiation has taken its toll. All of the organization, the burden of uncertainty, of management, the coordination of care, the careful communication, has worn me down. And two years ago I couldn’t take it any longer. I was at a breaking point of being completely overwhelmed. The burden put on me by the system, the burden of uncertainty and fear, and the shear unrelenting continuity of not knowing where to turn was reaching a crisis point.<br /><br />And in the midst of that, unexpectedly, unbelievably, Dr. Tammie Dewan saw me. She saw our family’s struggle. She turned towards my suffering instead of away. And where it would have been easy to say that it wasn’t in her scope, that her practice was full, instead she saw me and chose to take our son on. No, she chose to take our family on. She saw through the façade I put on for others, and asked ‘How can I be helpful? <br /><br />For two years we knew that we had a medical home. We knew that the burden of coordination, of management, of communication wasn’t solely on us. For a little while, I knew that if my list wasn’t ready, it was ok, because she had it covered. I didn’t have to follow up with every specialist, because she and her staff would make sure faxes were faxed, requisitions were sent and reports were finished. <b>Those</b> burdens were at least taken off my shoulders. Yes, we still had the uncertainty of rare disease, but we had less uncertainty of care. <br /><br />It has been a sweet, sweet relief.<br /><br />But more than anything, it has been a relief to be seen. To know that I didn’t have to pretend to know, or not know, or manage a relationship in order to get the best care. To know that she turned towards us, and saw us. She asked us our goals. Asked our son his goals. And worked to keep seeing us for who we are.<br /><br />I don’t say this word much, but that has truly been a blessing. When so many turn away from pain, she turned towards it.<br /><br />I don’t know what we’ll do now. I’m scared. And sad. But so grateful for the time that we had with her. I wish her the best in her move. Her patients in her new practice are so very fortunate.<br /><br />If you’re a healthcare provider and you’re reading this, I ask you two things; Do you turn into suffering? Do you choose to <b>see</b> your patients? Their families? Or just their symptoms? Because the latter may make you a good doctor. The former will show you are a healer.<br /><br />Thank you Dr. Tammie Dewan for being both a doctor and a healer.<br />isabel jordanhttp://www.blogger.com/profile/01087403575321827122noreply@blogger.com2tag:blogger.com,1999:blog-671730244319076817.post-13954448247011149342019-02-18T16:06:00.004-08:002019-02-18T16:13:06.479-08:00On the nature of expertise<br />
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<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCsweb1B9AnQ21KDH_1WLVYO8ts7KNWzWbCeC-92Kw6RLrPVlnOGOc77hSTVYt_OR-GGOfKgY2aygQ8qSXkZz9CcJLd5DQQNNA9yGcNhEYdlRp-qrdUbPXoCfhZ5XEHc6sZ6qNdY7jq8mM/s1600/chronic+life+big.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCsweb1B9AnQ21KDH_1WLVYO8ts7KNWzWbCeC-92Kw6RLrPVlnOGOc77hSTVYt_OR-GGOfKgY2aygQ8qSXkZz9CcJLd5DQQNNA9yGcNhEYdlRp-qrdUbPXoCfhZ5XEHc6sZ6qNdY7jq8mM/s320/chronic+life+big.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Photo montage of an IV bag & pump, a home blood pressure monitor, & a medication blister pack</td></tr>
</tbody></table>
<br />
<span style="font-family: "verdana" , sans-serif;"><span style="font-size: large;">There’s been a lot of online conversation lately about the nature of
expertise and what it means in the health research world. There are some who
posit that the word ‘expert’ needs to stay in firmly in the lane of those who
hold MDs and graduate degrees. They assert that ‘experts’ are the people who
have finished serious courses of study and deserve that moniker. It has been
further proclaimed that patients and families who use the term ‘experts’
confuse the meaning and this leads to the death of expertise.</span></span><br />
<span style="font-family: "verdana" , sans-serif;"><span style="font-size: large;">
</span></span><span style="font-family: "verdana" , sans-serif;"><span style="font-size: large;"><br />
Frankly, I’m confused. </span></span><br />
<br />
<span style="font-family: "verdana" , sans-serif;"><span style="font-size: large;">
</span></span><br />
<span style="font-family: "verdana" , sans-serif;"><span style="font-size: large;">
</span></span><span style="font-family: "verdana" , sans-serif;"><span style="font-size: large;">It has been several years that I’ve been participating as a partner in
health research and quality improvement endeavours. At no time, did I think to
imagine that I was an expert in healthcare policy, metabolic bench research,
genetics, or psychology (in the latter, only the armchair type on my friends).
However, I found that what I (and my patient partner co-investigators) brought was
an expertise that was previously inaccessible to the researchers we worked
with. While clinicians and researchers were experts in their fields of study,
they had no idea how their patients and their families navigated the real world
of health care, disability, caregiving, and chronically ill life. My knowledge
(and that of other patient partners) – hard won through years of (challenging)
life experience, provided a perspective on many areas of research from
formulating questions, to data analysis, to knowledge translation. This patient
partner perspective was not one that other research partners could acquire
through any course of (formal) study.</span></span><br />
<br />
<span style="font-family: "verdana" , sans-serif;"><span style="font-size: large;">
</span></span><br />
<span style="font-family: "verdana" , sans-serif;"><span style="font-size: large;">
</span></span><span style="font-family: "verdana" , sans-serif;"><span style="font-size: large;">In fact, if you look at the Merriam-Webster dictionary, ‘<a href="https://www.merriam-webster.com/dictionary/expert" target="_blank">expert</a>’ is defined as ‘having,
involving, or displaying special skill or knowledge derived from training or
experience’. This definition respects that both the clinician/scientists and
the patient partners have equal right to the title of expert. It respects that
there are different ways of acquiring expertise, and areas of expertise.</span></span><br />
<br />
<span style="font-family: "verdana" , sans-serif;"><span style="font-size: large;">
</span></span><span style="font-family: "verdana" , sans-serif;"><span style="font-size: large;">Does calling patients experts mean the denigration of that label of
expert? Will that mean that people will no longer respect ‘true’ (i.e.
scientific) expertise? Well, this is where the argument against calling patient
partners experts falls down.</span></span><br />
<br />
<span style="font-family: "verdana" , sans-serif;"><span style="font-size: large;">
</span></span><span style="font-family: "verdana" , sans-serif;"><span style="font-size: large;">Patient expertise does not have to diminish scientist/clinician
expertise. Both types of expertise can co-exist together. Think of the
world of arts where the master crafter doesn’t deny the artistry of a
classically trained artist and a (secure) classically trained artist doesn’t
reject the artistry of master craftsmanship. They can both co-exist in
harmony. </span></span><br />
<span style="font-family: "verdana" , sans-serif;"><span style="font-size: large;">
</span></span><span style="font-family: "verdana" , sans-serif;"><span style="font-size: large;">Those with wisdom respect that there are others that have access to
knowledge they don’t have, and they seek it out and respect it. And while I’d
like to think that labels don’t matter, in the hierarchical world of health
care, healthcare research, and healthcare policy, giving respect to patient
partners where it is due has been a long time coming.</span></span><br />
<span style="font-family: "verdana" , sans-serif;"><span style="font-size: large;">
</span></span><span style="font-family: "verdana" , sans-serif;"><span style="font-size: large;">
</span></span><br />
<span style="font-family: "verdana" , sans-serif;"><span style="font-size: large;">
</span></span><span style="font-family: "verdana" , sans-serif;"><span style="font-size: large;">I hold
knowledge that is important to improving health care systems and research. I
equally know that clinicians and researchers hold knowledge that we need to
make health and healthcare better. Respecting each other’s expertise is key in
making better decisions together. </span></span> <br />
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</style>isabel jordanhttp://www.blogger.com/profile/01087403575321827122noreply@blogger.com9tag:blogger.com,1999:blog-671730244319076817.post-39922052268974420092019-01-08T16:38:00.003-08:002019-02-18T16:09:19.059-08:00Curiosity and Patient Partnership... is that the magic combination?<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhemgA3_FQtmfMQejju7WyCF0LQdQpCdyW8sYNtY8lUpD0ZP6MYHFV70VodTyPIgwSLdMqclLp6JYjcdVDLjSKv3p0QlL61uL9ZkH13Vl0UvTLDDqfLNw_mkjJIuPzlylXCuPCiFlnoJfC1/s1600/blue+sky+and+mountains.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhemgA3_FQtmfMQejju7WyCF0LQdQpCdyW8sYNtY8lUpD0ZP6MYHFV70VodTyPIgwSLdMqclLp6JYjcdVDLjSKv3p0QlL61uL9ZkH13Vl0UvTLDDqfLNw_mkjJIuPzlylXCuPCiFlnoJfC1/s320/blue+sky+and+mountains.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Snowy mountains in distance framed by bare trees, blue sky behind</td></tr>
</tbody></table>
<br />
<br />
I admit that I admire people with real curiosity; those people that seek out new points of view in order to enrich their own understanding of the world, the people that do so with humility and an understanding that their own perspective is limited by their experience.<br />
<br />
Perhaps this is why my experience as a patient partner as a co-chair for the <a href="https://smdm.org/meeting/40th-annual-north-american-meeting" target="_blank">Society for Medical Decision Making Annual North American Meeting</a> this past fall was such a positive one. My fall was a very full one - conferences, meetings, presentations, a variety of family crises - all piled on top of one another in the sort of jumble that seems to have become my usual hot mess (but that remains the topic of another blog post). But because of the chaos, and the running to keep up, and the picking up the pieces that have fallen through the cracks, reflection has taken its own sweet time.<br />
<br />
But the feeling that I've had since first being asked to co-chair over a year ago, I think is worth some analysis to see just why it is so different, and why I would unhesitatingly partner with any of the people I interacted with while learning so much myself. I have to be honest here, with every new patient partnership endeavour, I *still* enter with a slight feeling of trepidation - whether that feeling is from my own insecurities, whether it's from a lack of confidence that I'll be respected, or even that despite the good will of the individuals partnering with me, their organization won't buy in to ensure follow through - who knows? It's likely a combination of the above. Certainly, I've been burned by any and all of these, and as a person who trades on her lived experience, it's all too easy to only blame myself when things go awry. Don't worry, I'm actively working on that.<br />
<br />
Well, when it came with working with my amazing co-chairs, <a href="https://twitter.com/hwitteman" target="_blank">Dr. Holly Witteman</a> (who initially approached me), <a href="https://twitter.com/WilliamDale_MD" target="_blank">Dr. William Dale</a> (who I got to know as a voice on the phone in innumerable meetings), Beverly Canin (amazing and experienced patient co-chair with a depth and breadth of experience), as well as the <a href="https://twitter.com/socmdm" target="_blank">SMDM</a> staff and board, not once did I feel dismissed or ignored. Did this mean that my every whim as a patient/caregiver was magically endorsed? Is this what I want? Of course not. What it meant is that we had respectful, meaningful dialogue. Honestly, one of the best outcomes for me was learning - learning about the science of decision making, learning about the process of putting together a conference, learning about the ways we can all move forward together towards a common goal.<br />
<br />
At every turn, my concerns, my input, my ideas (as well as those of fellow patient partners) were treated as valid, as interesting, and as new information to help enrich the experience of conference attendees. While Dr. Witteman as the impetus behind making <a href="https://smdm.org/meeting/page/patients-included-2018-montreal/40th-annual-north-american-meeting" target="_blank">SMDM18 #PatientsIncluded</a>, the Society took that idea and engaged fully with it. I'd like you to read that last sentence again please. It wasn't about <b>patient</b> engagement. It was about the <b>system</b> (in this case the Society) enthusiastically engaging in order to learn and create something new. Is this the difference? Instead of looking it as a favour to patients that we need to be 'engaged', they stepped up and engaged themselves in this idea of partnership. Did we truly meet half-way? I'd argue that SMDM and the professionals associated with it actually went more than half-way. They recognized the barriers, implicit power dynamics, and possible difficulties that could make it difficult for patients to speak up and crossed the floor to fully invite us in. I was impressed. I don't impress easily. I think what they had was a genuine curiosity - a curiosity to learn about a new perspective, a different point of view, and the understanding that we, as patients and caregivers, brought new value and knowledge that enriched the conference experience. Curiosity and respect - these could be the key ingredients.<br />
<br />
Of course funding was an issue (hey, as a co-chair I was intimately involved with the hurry up and wait of sponsor/grant notification), so wish lists were not always reality. But the follow through of genuine inclusion was there. So, to be clear... here is a partial list of things that made a difference to me in this partnership opportunity - things that I hope other organizations take note of when partnering with patients themselves.<br />
<ul>
<li><b>Recognize implicit power dynamics</b> and work to reduce them. Patients/caregivers are new to your space and may not feel free to voice their opinions. Recognizing this explicitly and finding ways we can share our views safely makes a difference.</li>
<li><b>Make sure you are partnering with more than one patient</b>. Our views are diverse and the more of us you partner with, the more interesting and valuable the partnership opportunities.</li>
<li><b>Understand that our lives, are by their very nature erratic</b> and full of unexpected complications. Work that into meeting times and ways that we can participate in order to maximize opportunities to share/work together. This point and the one above work together. When you engage with more than one of us, you help take the pressure off when our erratic lives may go off the rails for health reasons. It makes it easier to re-engage when things get under control.</li>
<li>Understand that you are not doing us a favour by engaging. <b>A truly collegial atmosphere makes us understand that you truly value us as partners</b>. </li>
<li><b>Pay us for our labour, our time, our contributions</b>. Let us know at the beginning that you will be doing so and ask us how compensation will best work for us. Recognizing us for our work, much as you are recognized for yours shows respect. You can check <a href="https://pxjournal.org/journal/vol5/iss3/2/" target="_blank">this</a> paper out if you'd like to learn more about patient compensation in healthcare research (full disclosure, I am one of the co-authors).</li>
</ul>
I sincerely hope I have more opportunities like this. It set a bar so high I fear nobody else will reach it. But my expectations will be there from now on and I need organizations to meet them. Maybe that's what it will take, more of us having these expectations. But, you know, looking them over, I don't think they're unreasonable. Maybe they are new for how organizations partner with patients, but they really shouldn't be new for how people interact with others. We all just need to remember two words... Curiosity and respect... <br />
<br />isabel jordanhttp://www.blogger.com/profile/01087403575321827122noreply@blogger.com1tag:blogger.com,1999:blog-671730244319076817.post-35024618961551996902019-01-03T12:19:00.001-08:002019-01-03T13:34:53.789-08:00I'm 49. And pretty damned happy about itSo I'm happy to say that I'm 49 years old today. Not 49 years young. Not
49 and holding. My age is a badge, a prize that I get every year. It tells me that I made it, again. That I survived another rotation around the sun. There were times in my turbulent teen years that I didn't want to make it, that I didn't know my place here in this world, that I questioned if I even belonged here with everyone else.<br />
<br />
Some of the years since have been absolute joy and some have been so very difficult. But mostly they have been a mix of pain, and love, and struggle, and meh, and fun, and everything in between. And this year, like every year, I celebrate that I made it. I am here and I defiantly push on. I hope that I've learned something. I'm grateful to everyone who has taught me to stop and listen. Recently, I'm trying to learn to be kinder to myself. Maybe even as kind to myself as I am to others.<br />
<br />
I remember turning 30 in the California desert. And being so excited. I
had made it. And then 40. Again I was excited. People kept telling me
that the excitement of getting older, the joy of gaining experience
would fade as the years marched on. But it hasn't. Here I am on the cusp
of 50, and I still think 'Yes! I am still here!' Life continues to be
hard, but there continues to be joy. And I am still here. There is
celebration in that. The joy to me is in knowing that the alternative is
in not knowing how things will turn out, in not knowing what's next. I
guess, I remain curious about tomorrow.<br />
<br />
I also remember people always telling me that as I got older this feeling would go away - that as I got older I would be less excited about my next birthday. I believed them. I mean, they were older than me, they must hold some secret knowledge. Well guess what. They were wrong. I know myself. <br />
<br />
As far as I'm concerned, aging is a badge of courage.<br />
<br />
We get older and hopefully wiser (I so hope I am getting wiser). I love to celebrate my birthday, and everyone else's birthdays too. I think we have every right to celebrate that we've made it another year. We are still here, we're still trying. And we get to keep going.<br />
<br />
So, Happy Birthday to me. Happy Birthday to everyone else who shares January 3rd as their birthday, and Happy Birthday whenever you get to mark your anniversary around the sun.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGvxEjfnuykvJqp8TFdL4AAOiGjNR7EKM1hDtzvrMcbCcr24iV-m9ip0uYdPOsDKDKo1LjussQseE_pRaaWIdgo3OGeAjujyyct7w9monTZF1Fom53zyewvNuRQvhloB_Vv72whmLkgeeR/s1600/ocean+bday+cake.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1600" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGvxEjfnuykvJqp8TFdL4AAOiGjNR7EKM1hDtzvrMcbCcr24iV-m9ip0uYdPOsDKDKo1LjussQseE_pRaaWIdgo3OGeAjujyyct7w9monTZF1Fom53zyewvNuRQvhloB_Vv72whmLkgeeR/s320/ocean+bday+cake.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">not my cake - this was my son's ocean themed cake from last year</td></tr>
</tbody></table>
<br />
<br />
<br />isabel jordanhttp://www.blogger.com/profile/01087403575321827122noreply@blogger.com3tag:blogger.com,1999:blog-671730244319076817.post-26865488491978230622018-12-28T14:51:00.001-08:002018-12-28T14:51:49.286-08:00HeroToday I'm really excited to be hosting a guest blogger. This young woman is one of my favourite writers and I think she has a big future in writing ahead of her - and this isn't my bias speaking. As soon as I read this earlier this year, I knew I wanted to post this on my blog and I'm really happy today is the day. Evie Jordan is 14, and amongst other things, including making music and playing soccer, she loves writing. She sees a future for herself in science and in writing and I look forward to seeing where she ends up. Oh yes, she's also my daughter. I couldn't be more proud of her. I hope you enjoy reading this as much as I did. The photograph accompanying this piece is also hers.<div class="MsoNormal">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-SrR80sTSumMWZUxngkm-w_KZe3JA5mXZEGUoFd1hKc5jPs72ug2KkqHmVaZxsBw-QXZ3QWu4y54t4DahmyvQNRPb19EHdwgCymIhPuSO0RhZJlFDdh1CksdU_EFqOS8lF_c4klndMoSz/s1600/IMG_5950.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-SrR80sTSumMWZUxngkm-w_KZe3JA5mXZEGUoFd1hKc5jPs72ug2KkqHmVaZxsBw-QXZ3QWu4y54t4DahmyvQNRPb19EHdwgCymIhPuSO0RhZJlFDdh1CksdU_EFqOS8lF_c4klndMoSz/s320/IMG_5950.JPG" width="320" /></a></div>
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<span lang="EN-GB" style="font-family: "calibri" , sans-serif; font-size: 20.0pt;">Hero:</span></div>
<div class="MsoNormal">
<span lang="EN-GB" style="font-family: "times"; font-size: 16.0pt;">noun, <b>plural</b> <b>he·roes;</b> <b>for
5</b> also <b>he·ros</b></span><b><span lang="EN-GB" style="font-family: "times"; mso-ansi-language: EN-GB;">.</span></b><span lang="EN-GB" style="font-family: "times"; font-size: 10.0pt;"></span></div>
<div class="MsoNormal" style="background: white; margin-bottom: .0001pt; margin-bottom: 0cm; margin-left: 9.6pt; margin-right: 0cm; margin-top: .1pt; mso-list: l0 level1 lfo1; mso-para-margin-bottom: .0001pt; mso-para-margin-bottom: 0cm; mso-para-margin-left: 9.6pt; mso-para-margin-right: 0cm; mso-para-margin-top: .01gd; tab-stops: list 36.0pt; text-indent: -18.0pt;">
<span lang="EN-GB" style="color: #666666; font-family: "verdana" , sans-serif; mso-ansi-language: EN-GB; mso-bidi-font-family: Verdana; mso-fareast-font-family: Verdana;"><span style="mso-list: Ignore;">1.<span style="font: 7.0pt "Times New Roman";"> </span></span></span><span lang="EN-GB" style="color: #666666; font-family: "verdana" , sans-serif; mso-ansi-language: EN-GB;">A person noted for courageous acts or nobility of character:
</span><i><span lang="EN-GB" style="color: #c0b5b5; font-family: "verdana" , sans-serif; mso-ansi-language: EN-GB;">He became a local hero when he saved the drowning child.</span></i><span lang="EN-GB" style="color: #666666; font-family: "verdana" , sans-serif; mso-ansi-language: EN-GB;"></span></div>
<div class="MsoNormal" style="background: white; margin-bottom: .0001pt; margin-bottom: 0cm; margin-left: 9.6pt; margin-right: 0cm; margin-top: .1pt; mso-list: l0 level1 lfo2; mso-para-margin-bottom: .0001pt; mso-para-margin-bottom: 0cm; mso-para-margin-left: 9.6pt; mso-para-margin-right: 0cm; mso-para-margin-top: .01gd; tab-stops: list 36.0pt; text-indent: -18.0pt;">
<span lang="EN-GB" style="color: #666666; font-family: "verdana" , sans-serif; mso-ansi-language: EN-GB; mso-bidi-font-family: Verdana; mso-fareast-font-family: Verdana;"><span style="mso-list: Ignore;">2.<span style="font: 7.0pt "Times New Roman";"> </span></span></span><span lang="EN-GB" style="color: #666666; font-family: "verdana" , sans-serif; mso-ansi-language: EN-GB;">A person who, in the opinion of others, has special achievements, </span></div>
<div class="MsoNormal" style="background: white; margin-bottom: .0001pt; margin-bottom: 0cm; margin-left: 9.6pt; margin-right: 0cm; margin-top: .1pt; mso-para-margin-bottom: .0001pt; mso-para-margin-bottom: 0cm; mso-para-margin-left: 9.6pt; mso-para-margin-right: 0cm; mso-para-margin-top: .01gd;">
<span lang="EN-GB" style="color: #666666; font-family: "verdana" , sans-serif; mso-ansi-language: EN-GB;">abilities, or personal qualities and is
regarded as a role model or ideal: </span><i><span lang="EN-GB" style="color: #c0b5b5; font-family: "verdana" , sans-serif; mso-ansi-language: EN-GB;">My older sister is
my hero. Entrepreneurs are our modern heroes.</span></i><span lang="EN-GB" style="color: #666666; font-family: "verdana" , sans-serif; mso-ansi-language: EN-GB;"></span></div>
<div class="MsoNormal" style="background: white; margin-bottom: .0001pt; margin-bottom: 0cm; margin-left: 9.6pt; margin-right: 0cm; margin-top: .1pt; mso-list: l0 level1 lfo3; mso-para-margin-bottom: .0001pt; mso-para-margin-bottom: 0cm; mso-para-margin-left: 9.6pt; mso-para-margin-right: 0cm; mso-para-margin-top: .01gd; tab-stops: list 36.0pt; text-indent: -18.0pt;">
<span lang="EN-GB" style="color: #666666; font-family: "verdana" , sans-serif; mso-ansi-language: EN-GB; mso-bidi-font-family: Verdana; mso-fareast-font-family: Verdana;"><span style="mso-list: Ignore;">3.<span style="font: 7.0pt "Times New Roman";"> </span></span></span><span lang="EN-GB" style="color: #666666; font-family: "verdana" , sans-serif; mso-ansi-language: EN-GB;">The principal male character in
a story, play, film, etc.</span></div>
<div class="MsoNormal" style="background: white; margin-bottom: .0001pt; margin-bottom: 0cm; margin-left: 9.6pt; margin-right: 0cm; margin-top: .1pt; mso-para-margin-bottom: .0001pt; mso-para-margin-bottom: 0cm; mso-para-margin-left: 9.6pt; mso-para-margin-right: 0cm; mso-para-margin-top: .01gd;">
<span lang="EN-GB" style="font-family: "verdana" , sans-serif; font-size: 10.0pt;">(https://www.dictionary.com/browse/hero)</span></div>
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<div class="MsoNormal" style="text-indent: 9.6pt;">
<span lang="EN-US" style="font-size: 14.0pt; mso-bidi-font-size: 12.0pt;">Many are hailed as heroes but I believe that
there are many more unsung warriors that fight for what is right every day.
What defines these people as heroes even though they are not almighty, or rich?<span style="mso-tab-count: 1;"> </span></span></div>
<div class="MsoNormal" style="text-indent: 9.6pt;">
<span lang="EN-US" style="font-size: 14.0pt; mso-bidi-font-size: 12.0pt;">A hero is someone who fights. Not stands idly
by as wrong is done. A hero is someone who cares. Do you care even about those
whom you disagree with? A hero is someone who will help, even with the little
things. But mostly, a hero is, and will always be, a person with a conscience
and a will to uphold it.</span></div>
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<span lang="EN-US" style="font-size: 14.0pt; mso-bidi-font-size: 12.0pt;">Heroes roam the streets, walk the halls of
schools, live in neighborhoods, and breathe, like you, and I. These people are
everywhere, and you will see their capes flow and powers fly if you just look.</span></div>
<div class="MsoNormal" style="text-indent: 9.6pt;">
<span lang="EN-US" style="font-size: 14.0pt; mso-bidi-font-size: 12.0pt;">The other day I saw a hero, the other day,
you probably saw one too. They are everywhere and <i style="mso-bidi-font-style: normal;">always</i> there, for <i style="mso-bidi-font-style: normal;">you</i>.
Maybe not specifically, maybe they don’t utter your name and come to save you
from a dragon, but they are there to save you from yourself. </span></div>
<div class="MsoNormal" style="text-indent: 9.6pt;">
<span lang="EN-US" style="font-size: 14.0pt; mso-bidi-font-size: 12.0pt;">Are you overwhelmed and lost? Busy and tired?
Making a mess and tensions flying high? Has this ever happened? Because I bet
you, a hero would be willing to help.</span></div>
<div class="MsoNormal" style="text-indent: 9.6pt;">
<span lang="EN-US" style="font-size: 14.0pt; mso-bidi-font-size: 12.0pt;">Think back, have you ever met a hero? Someone
who even just passed a pencil, asked about a day? Because I have, and every
time I see an invisible cape flowing in the make-belief wind, I am reminded
that someday I will look in the mirror, and I will have done enough to be a
hero too.</span></div>
<div class="MsoNormal" style="text-indent: 9.6pt;">
<span lang="EN-US" style="font-size: 14.0pt; mso-bidi-font-size: 12.0pt;">Heroes can be anyone, really. They could be
me, or you! So next time you walk around, look for the capes, and they <i style="mso-bidi-font-style: normal;">will</i> be there. So next time you look
into a mirror, you’ll notice a cape flowing there too.</span></div>
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</style>isabel jordanhttp://www.blogger.com/profile/01087403575321827122noreply@blogger.com3tag:blogger.com,1999:blog-671730244319076817.post-74737520443859844702018-10-08T16:07:00.001-07:002018-10-08T16:10:15.570-07:00Paying the Piper (or the cost of remembering)<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXYGeuBgKOEIkHWIbF09UgS-VBq383E63CfxUW8W-f3X-1909ICbPlJCfRoE0CIgt5Mbww6-r2qnI9BKsB4gNUr1H9Ex4yJ5X76hAXfAqrOOIQYMmMNlA_RZFrdw4YSpDjPf-ZUt0RUToW/s1600/sky+pic+business+card.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1600" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXYGeuBgKOEIkHWIbF09UgS-VBq383E63CfxUW8W-f3X-1909ICbPlJCfRoE0CIgt5Mbww6-r2qnI9BKsB4gNUr1H9Ex4yJ5X76hAXfAqrOOIQYMmMNlA_RZFrdw4YSpDjPf-ZUt0RUToW/s320/sky+pic+business+card.jpg" width="320" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;">I’m sitting
here, trying to write a couple of presentations for a conference I’m leaving
for in a few days. As per usual, I’ve left things too long for my comfort and I
wish I did more earlier. To be honest, I’ve always left things a little to the
last minute – there’s no changing who I am, I guess.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;">But these
presentations & talks that I do about our experiences through the health
care system, sometimes I think I leave them for a reason. I carefully craft my
message each time, and each time I go through my photos, and our history,
looking for the messages I need to leave the audience with. And each time,
because the lessons learned, we’ve learned through hardship, the photos bring
me back to the moments I was there. And that hardship has been hardship from
parenting a rare disease journey and witnessing our son’s pain and distress.
And I can’t change any of it. I can only remember it.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;">And I feel
it all again.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;">Does the
audience know this?</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;">Do the
organizers?</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;">Do <b>I</b> when I
say ‘yes’?</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;">I do this
because it’s important. I do this because, I feel like I can make things better,
that I can ease the way for the families that come after mine. But right now,
as I take a break from PowerPoint, my photos, and my writing, I take a
breath and wonder:</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;">Do they
know the cost? Will I ever stop paying?</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;">Maybe the
day it has less impact on me is the day it will have less impact on my audience.
I don’t see that happening any time soon.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;">Until then,
I’ll keep writing. Until then, I hope something that I say, or show, will ease
the way for another family like mine.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;">Ok, back to
PowerPoint.</span></div>
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</style>isabel jordanhttp://www.blogger.com/profile/01087403575321827122noreply@blogger.com2tag:blogger.com,1999:blog-671730244319076817.post-71532344839619699522018-02-15T16:43:00.000-08:002018-02-15T21:15:57.208-08:00Patient Engagement: You’re Doing it Wrong<style id="dynCom" type="text/css"><!-- --></style>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHN9EZEmrQ6QATYEly5GQWVu8ApmAkp1aGeu7R9YSaMNCzY9irmpQOwBX8-Wz1DXzI-1fi0BEnXOCysdb_8_K50smQ4Mz-CjV7ulOCdEoJfEzenz_rUvcSX2WDSg7neTIO4hdaqwrEGOUk/s1600/IMG_5150.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1600" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHN9EZEmrQ6QATYEly5GQWVu8ApmAkp1aGeu7R9YSaMNCzY9irmpQOwBX8-Wz1DXzI-1fi0BEnXOCysdb_8_K50smQ4Mz-CjV7ulOCdEoJfEzenz_rUvcSX2WDSg7neTIO4hdaqwrEGOUk/s320/IMG_5150.JPG" width="320" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Buckle up kiddos. This may be a bumpy ride. Generally on
here, I try to share stories of how to do things right. Show leadership by
example. Model change, if you will. And I’ve tried to let this one go. Let it
slide. Chalk it up to experience. But, my friends, I’ve been had. With all my
talk (and those who know me, have heard me) of being savvy about when to
engage, and when to pass things up, I let my excitement for a project lead me
into the lion’s den. Or perhaps just to the den of apathy. Probably more the
latter then the former.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So let me share with you my story of <span style="mso-comment-continuation: 2;"><span style="mso-comment-continuation: 3;">Patient
Engagement: You’re Doing it Wrong</span></span><span class="MsoCommentReference"><span style="font-size: 9.0pt;"><a class="msocomanchor" href="https://www.blogger.com/blogger.g?blogID=671730244319076817#_msocom_3" id="_anchor_3" name="_msoanchor_3"></a><span style="mso-special-character: comment;"></span></span></span>.
If you’re in any kind of position where you’re engaging patients and you see
any echoes of what you’ve done here. Take this time to reflect. If you’re a
patient or a caregiver, STOP. DROP. AND ROLL. No. Wait. That’s something else,
altogether. If you’re one of us, know that we all get sucked in sometimes. And
it’s not our fault. It comes from the best place in our heart. And every time,
it feels awful.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So, on to the story. Are you buckled in?</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Being an Experienced Patient Advocate™ I was flattered to be
approached by clinician project managers to create fundraising document for a
new hospital-wide initiative. I was wary, because I haven’t had great
engagement experiences with this facility. But generally, when dealing with
individual clinicians, their hearts are in the right place and we can see eye
to eye. But what sealed the deal, is the initiative was around an issue that
meant a lot (everything) to me. An issue that had created trauma for my son,
for me and that I could see was creating trauma for others. It killed me that
it wasn’t being properly dealt with. The fact that insiders wanted the funds to
deal with it in a systemic, hospital wide way, was absolutely music to my ears.
And they were actually reaching out to a parent. I wanted in. I wanted in to
get them to bring in more parents. And patients. Systemic change ----
muah-ha-ha!!!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It was a good meeting. It was a hard meeting. I told our
story. Illustrated why we had problems. How we had problems. Why they needed
diversity represented. Honestly, every time I trot out our story to clinicians,
it cuts. It can’t help but cut. But it is so important. I read a document. I
provided edits. Was on an email chain. I worked. For free. But that’s ok. It
was profoundly important to me. The change it could potentially make for
patients and families would be worth it.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And then off it went. And I waited to see what would happen.
For months. And of course, life moved on. Several months later, my patience ran
out. And I emailed the project managers, and the patient experience
representative on the project to ask for a status report on funding, on the
project. And do you know what they told me? Me, the only patient/caregiver on
the project? Well if you guessed ‘nothing’ because nobody respected me enough
as a colleague to bother replying to my email, you’ve guessed right.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Nothing. Nada. Rien. I wouldn’t dream of responding to a
business colleague or volunteer like that. Or not responding, I guess? The best
case scenario here is that it went nowhere and the funding didn’t come through.
About which I <b>still</b> should have been informed. The very least you do with a patient
partner is treat them like a team member. That experience gave me the feeling
of ‘I wash my hands of you’. I am not here to chase anybody down to be a member
of their club. I have better things to do, more important things today, and
more self-respect than that.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I was done. I moved on. Because I am fortunate to work with
some other fantastic groups that understand patient partnership.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Or so I thought.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Two months later I get a mail-merge style email obviously
going to some list, asking if I’d like to be on a steering committee for the
very project I thought I was already a part of. I’m sorry, what? How was I not
included already on this? How was my previous email not answered? How do you
ignore the <b>only</b> patient you included before and told that you were going to
include in future planning?
How was I mined for information and ideas and then dumped like yesterday’s
news?</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So of course I asked. And again I didn’t get any answers. I
got an email full of platitudes and nothing else.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So what’s the object lesson here for people ‘engaging’ with
patients?</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Stop engaging patients if you’re not actually ready to
partner with them. Stop using our stories to get money for your research and
your clinical programs. Our stories belong to us. If you’re going to use me,
then I’d better be making decisions with you.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
What’s the object lesson for me?</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My initial instincts were right. I shouldn’t have engaged
with this <span style="mso-comment-continuation: 6;">group</span><span class="MsoCommentReference"><span style="font-size: 9.0pt;"><span style="mso-special-character: comment;"></span></span></span>.
I was left feeling used, vulnerable and stupid for thinking things would work
out differently. I traded my family’s story for what, exactly? I don’t know,
because I was never informed. In fact, I remember telling them this very thing
in our meeting. Engaging patients means keeping us informed of the results of engagement.
What happened to me is harmful. It took me from my home, away from my family,
put me in a place of vulnerability, and put me in a place where I wasn’t
respected.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The result: I won’t engage with this group again. And I’ll
warn others off. And I’ll generally be more wary of engagement opportunities.
This does nothing to advance the cause of healthcare improvement. I’m guessing
this is the opposite effect of the initial initiative.</div>
<div class="MsoNormal">
<br /></div>
<span style="font-family: "calibri"; font-size: 12.0pt;">Harm
was done.</span>isabel jordanhttp://www.blogger.com/profile/01087403575321827122noreply@blogger.com13tag:blogger.com,1999:blog-671730244319076817.post-16913150015574505892017-11-10T10:55:00.003-08:002017-11-11T18:10:14.276-08:00Open Access Science for Quality of Life and Partnership in Care<span style="font-family: inherit;">It's been a while since I've posted - too busy, too preoccupied, too everything. Happily, Jon Tennant (<a href="https://twitter.com/Protohedgehog" target="_blank">@Protohedgehog</a>) alerted me to a neat contest the Open Access science people were having as part of <a href="http://www.opencon2017.org/" target="_blank">OpenCon2017</a>. The idea was to, in less than 750 words, describe what Open Access science means to you. Now, as a science enthusiast and a patient advocate and a parent of a #raredisease patient, I thought I might have something to contribute to the conversation. In any case, #OpenCon starts today, and I think it's well worth following. In the spirit of #OpenAccess here's my entry to the contest and what #OpenAccess means to me!<span style="font-size: normal;"> So thanks to Jon, and to the Open Access community to giving me the kick in the butt I so desperately needed to get writing again! </span></span><br />
<br />
<span style="font-family: inherit;"><span style="font-size: normal;">(BTW, want to see more reasons #OpenAccess is important to people? Of course you do.. check out the other entries at <a href="https://www.authorea.com/inst/14826" target="_blank">https://www.authorea.com/inst/14826</a>).</span></span><br />
<br />
<span style="font-family: inherit;"><span style="font-size: normal;">My son Zach, now 16, is an n=1. Something I never thought
could happen until he was four and a half and we sat at the medical genetics
office and received his undiagnosis. The symptoms he had, the differences that
marked him from his peers, the health concerns my husband & I were
tracking, they all added up. Yes, he had a genetic disorder. No, it didn’t look
like it fit into anything already characterized.</span></span><br />
<br />
<span style="font-family: inherit;"><span style="font-size: normal;">These words left us with no prognosis and no plan to move
forward with his healthcare. His grab-bag menu of symptoms and health-care
concerns that would wax and wane and turn into a variety of surprising crises would
follow him for the next 12 years. All of them without the ability to make a plan.
This is the reality of undiagnosis and rare disease – little prognosis, and
reeling from one specialist to the next, only reacting (hopefully in time) as
problems arise.</span></span><br />
<br />
<span style="font-family: inherit;"><span style="font-size: normal;">It’s not good enough. We grew a team around us, clinicians
who do research and who were willing to partner with us, fellow patients who
had similar concerns, people wise in the way of gathering information. We grew privileged
in our connections. As much as I could, I delved into the world of research to
find any clues that could inform the practice of Zach’s healthcare providers to
try new and innovative therapies. Did I understand everything I read? No. Did I
get better at it? Yes. Mostly, it sparked conversation with his providers. It
provided new avenues of thought. It was a springboard.</span></span><br />
<br />
<span style="font-family: inherit;"><span style="font-size: normal;">This
is how things stand now. My life is a beach, a rocky beach. </span></span><br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgD6AMQ4HqI1DP5pcK5jVbOshEcdsDazKkw3PELpy8jfOJ57KO1hmTgeZPrx7-Z6MKlp1CEbeJv_44J-SOoe0fHqGfLmRMEjuxJDmG0TOXge-wFgV4Yc_7wRzQuqGONko_qXKIRmb98Gq2F/s1600/standing+on+rocks.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgD6AMQ4HqI1DP5pcK5jVbOshEcdsDazKkw3PELpy8jfOJ57KO1hmTgeZPrx7-Z6MKlp1CEbeJv_44J-SOoe0fHqGfLmRMEjuxJDmG0TOXge-wFgV4Yc_7wRzQuqGONko_qXKIRmb98Gq2F/s320/standing+on+rocks.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="color: #0000ee;"><u>My life is a rocky beach</u></span></td><td class="tr-caption" style="text-align: center;"><span style="color: #0000ee;"><u><br /></u></span></td><td class="tr-caption" style="text-align: center;"><span style="color: #0000ee;"><u><br /></u></span></td><td class="tr-caption" style="text-align: center;"><span style="color: #0000ee;"><u><br /></u></span></td></tr>
</tbody></table>
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I spend my time tracking and graphing symptoms, medications
and treatments, researching new doctors, connecting with new patient
communities that might have insights I haven’t thought of, finding articles
that may be relevant to Zach’s care or a possible diagnosis. Each of those clues
is a stone on the beach and I can’t leave any of them unturned. Most of them
will yield no answers, but I can’t risk missing one. The more time I waste
doing any of those things, the less time I have for finding answers. I don’t
have time to waste.<br />
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<br /></div>
<div class="MsoNormal">
But at every turn, I run into walls. The Paywalls, to be
exact. Those effing paywalls. For us paywalls aren’t just frustrating, they can
be a block to a better therapy. A block to whether or not Zach can get out of
the house, whether or not he experiences less pain, whether or not he receives
better care. They are a personal affront to me. They are a time-waster as I
work to find a way to get through them.</div>
<div class="MsoNormal">
<br /></div>
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Now I recognize that I am enormously privileged because I
have gathered an amazing community around me that I can quietly ask to grant me
access. And they <b>always</b> generously help me. But I hate to go begging.
And I recognize that one in 12 people will have a rare disease in their
lifetime – a huge number of people. Most people won’t have easy access to
friends with the ability to send them paywalled articles. Why should I have
access while others don’t? Why should I access better treatment through current
research while others in the rare disease community are shut out? Open Access
helps to even the playing field and gives all of us more ability to partner
with our health care providers for better care in the search for better
treatments.</div>
<div class="MsoNormal">
<br /></div>
<span style="font-family: "calibri"; font-size: 12.0pt;">Some
of my community were recently at a Child’s Brain Health conference that was put
on in partnership with the research, clinician, and Parent community. I couldn’t
be there, but followed intently on Twitter. <a href="https://twitter.com/jackhourigan" target="_blank">@jackhourigan</a> tweeted from
<a href="http://twitter.com/raeofsunshine79" target="_blank">@raeofsunshine79</a>’s talk: “A worried mother does better research than the FBI.</span><br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxzu6xbprQ2FmyGDhwIkelVdQhme4g0cNl3QC1s0tw0SIKaaTRycjoisg8UUyUlnBT7vef1G0ZgMCzVArIhzs8EkKCr_SacuJAJWZu4CDt523QX860hJvGq7Ei_XGKaXHodMDroCpDbsPn/s1600/fbi+mom+by+raeofsunshine79.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="619" data-original-width="638" height="310" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxzu6xbprQ2FmyGDhwIkelVdQhme4g0cNl3QC1s0tw0SIKaaTRycjoisg8UUyUlnBT7vef1G0ZgMCzVArIhzs8EkKCr_SacuJAJWZu4CDt523QX860hJvGq7Ei_XGKaXHodMDroCpDbsPn/s320/fbi+mom+by+raeofsunshine79.png" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "calibri";">A worried mother does better research than the FBI</span></td></tr>
</tbody></table>
Why Open Access? I’ll tell you why, because for many people
with chronic illness and rare disease, it’s the only way we can equitably find
out about better treatments and partner more effectively with our clinicians.isabel jordanhttp://www.blogger.com/profile/01087403575321827122noreply@blogger.com5tag:blogger.com,1999:blog-671730244319076817.post-70403750555422162502017-06-01T15:51:00.000-07:002017-06-01T15:51:16.715-07:00Kindness shouldn't be blue sky thinking<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjD0u2zq4_VnFGe6U0oEXJ4Wae9MCkxpvrwHzHIs8az9XW7tAkZVDoAErQBhQQ4Z6K_eJ8mPfeIW-wOoQAG5yrpfFmACF0uAQSe2VVwpGEMfFwKDFrnAHkOLaINoBX6XrLliQSGVHqpjBCY/s1600/FullSizeRender.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjD0u2zq4_VnFGe6U0oEXJ4Wae9MCkxpvrwHzHIs8az9XW7tAkZVDoAErQBhQQ4Z6K_eJ8mPfeIW-wOoQAG5yrpfFmACF0uAQSe2VVwpGEMfFwKDFrnAHkOLaINoBX6XrLliQSGVHqpjBCY/s320/FullSizeRender.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kindness shouldn't be blue sky thinking</td></tr>
</tbody></table>
"I don't have any help today". The technician looked annoyed. I wasn't sure she was talking to us, initially. Frankly, it was an odd thing to say out of the blue after calling us into the room. I looked around, to see if she could have been talking to someone else.<br />
<br />
I must have looked at her with the obvious question on my face of 'what are you talking about? It was then she kind of looked down at my slightly nervous, ill, skinny
15yo, like he was annoying her. Down at his arm, where we had put some
topical anesthetic and a clear bandage where he preferred to get his
blood drawn, and suddenly I understood. <br />
<br />
Oh no. Not today. I'm not having that today. I put on my biggest, friendliest smile - looked right in her eyes and said "I'm sorry, I don't think you shared your name with us today." She was not coming at my son with that attitude and a needle without at least introducing herself to him (and to me). I guess <a href="http://hellomynameis.org.uk/" target="_blank">#HelloMyNameIs</a> hasn't made it's way to the lab at my local hospital yet. She was taken aback for a moment (my name? I need to tell them my name?) and then introduced herself. Only then did I tell her that my son, who although is ill, and nervous, is an old pro.<br />
<br />
Our family, more than most, knows about <a href="http://itdoesnthavetohurt.ca/" target="_blank">#ItDoesntHaveToHurt</a>. After a lifetime of painful procedures our son spent literally years of his life working with a therapist and on his own overcoming needle phobia. And despite the fact that his underlying rare disease makes it so that the topical anesthetic does little to help him, he is the king coper. He is a pro. This is not his first, nor will it be his last day at the rodeo.<br />
<br />
I didn't tell her any of that. But I'll tell you what I did want to say. That when faced with a clearly nervous, unwell young man, she chose to meet him with hostility instead of kindness. I don't know what was going on in her mind. It was the end of her day. Was she nervous? Do her employers give her the tools to help those with needle anxiety? Does she feel safe in the job she does? I don't know the answers to any of these questions. But I have to say, in the moment, I didn't give a good hot damn. She is a front-facing healthcare provider working with people of all ages and abilities. If she can't meet them with kindness, she'd better demand the tools to do so, or find something else to do. Because she's not coming near him with that attitude again.<br />
<br />
A lot of health care interactions could be improved by the simple acts of exchanging pleasantries, manners, treating patients as human beings. I truly don't understand why this doesn't happen more. So many of our (meaning our son's) healthcare interactions have happened and continue to happen in blood labs and medical day units. His perceptions of what healthcare is, whether it's comfortable, friendly, frightening, or even mundane have been framed by these experiences. It's all well and good to talk about partnership with your primary care provider and specialists, but we need to get it right here too. How young patients feel about these interactions may determine how readily they seek medical care later. As my good friend <a href="https://suerobins.com/" target="_blank">Sue Robins</a> always tells me, kindness always matters. She's right.isabel jordanhttp://www.blogger.com/profile/01087403575321827122noreply@blogger.com8tag:blogger.com,1999:blog-671730244319076817.post-34294220642563727222017-02-26T13:27:00.002-08:002017-02-26T13:27:58.748-08:00Rare Disease Research – moving from Study Participant to Research Partner
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<br />
On February 28th I'm honoured to be hosting a special Rare Disease Day <a href="https://twitter.com/hcldr" target="_blank">#hcldrtweetchat</a>. Two weeks ago <a href="https://twitter.com/JoeBabaian" target="_blank">Joe Babiain</a> approached me to see if I would be
interested in working something up with a rare disease focus coming up towards
rare disease day. To be honest I was grateful for the opportunity for a couple
of reasons. Looking back on these posts, it's obvious that there's been a bit
of a hiatus on writing here. This was just the push I needed. With a Rare
Disease Day theme of 'Research' this seems like the perfect time to talk about
how patients, caregivers, health care providers, and researchers can create an
environment of partnership to create change for the rare disease community. So,
thank you, Joe. Thanks for the push and thanks for the opportunity to talk
about my community, and to talk about my passion for partnership in both care
and research. And I'm looking forward to the conversation on Tuesday February
28th on on #hcldr at 5:30PT (8:30ET) about patient partnership in
research.<br />
<br />
NB: I'd also I'd like to thank Joe for being a great editor and <a href="https://twitter.com/couragesings" target="_blank">@couragesings</a>
for helping me find some great resources.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://www.blogger.com/blogger.g?blogID=671730244319076817" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a></div>
<br />
(The following was originally posted on the <a href="https://hcldr.wordpress.com/2017/02/25/rare-disease-research-moving-from-study-participant-to-research-partner/" target="_blank">#hcldr blog</a>)<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjA5_qFt12ajMTrlSmNY0eeWn9kJaTFyXp6k07u4P8tGmuGMRRUq_6aUJTHxpsMpeJqNqVK8680-HVNb88D-0DR6I3JhaAUyfbBFSbRMifT_NnE4wR2KP7KqBWa0PYAzb20-HgpVybtice8/s1600/rarediseasefdn_2017-Feb-23.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="203" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjA5_qFt12ajMTrlSmNY0eeWn9kJaTFyXp6k07u4P8tGmuGMRRUq_6aUJTHxpsMpeJqNqVK8680-HVNb88D-0DR6I3JhaAUyfbBFSbRMifT_NnE4wR2KP7KqBWa0PYAzb20-HgpVybtice8/s320/rarediseasefdn_2017-Feb-23.png" width="320" /></a></div>
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It’s <a href="http://www.rarediseaseday.org/" target="_blank">International Rare Disease Day </a>on February 28<sup>th</sup>
and by the beginning of February I start to reflect on what it means to me. It
wasn’t so long ago, that frankly it didn’t mean anything at all to me. Rare and
orphan diseases didn’t have any impact on my life, or at least I didn’t think
they did or ever would. If I knew that a rare disease was defined as a disease
that affected less that <a href="http://www.eurordis.org/about-rare-diseases" target="_blank">1 in 2000</a> people, I certainly wouldn’t think it would
have any relevance to me. However, taken all together, that means that rare
diseases in total affect <a href="https://www.rarediseasefoundation.org/research" target="_blank">1 in 12</a> people – and half of them are diagnosed when
they’re children. And I wouldn’t realize that one of those 1 in 12 would come
to be my son. I wouldn’t realize that the average time to diagnosis for rare
disease patients is over 7 years and for most of these diagnoses there is <a href="http://cdn.rarediseases.org/wordpresscontent/wp-content/uploads/2014/11/NRD-1008-FactSheet_5.pdf" target="_blank">noreal treatment</a>.</div>
<div class="MsoNormal">
<br /></div>
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All this applies for the 7000 or so named rare diseases.
Then there are those like my family – those of us still searching for a
diagnosis. We’re 15 years in. Multiple specialists in, reading study after
study, communicating with researchers directly, and left with more questions
than answers. We have piles of archived studies, ideas of where to go, but
mostly we work in partnership with our health care providers, hoping that one
day, somebody’s research bears fruit and an answer is found for our son.</div>
<div class="MsoNormal">
<br /></div>
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This is the current state of affairs in 2017 for rare
diseases. How do we move forward? For me there is only one answer. We can only
move forward together. There is limited funding for research. There is a
limited pool of donor resources for non-profits. There is a limited pool of
study participants for research studies. There are limits everywhere. What if
we could all help each other overcome the limits we have? What if we could
amplify each other’s efforts by being more efficient with the resources we each
have. Now wouldn’t that be something? It strikes me, we go further (and faster)
together, than we do apart.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
There are some incredible researchers out there doing great
work on rare disease. But they can’t do it alone. There are health care
providers seeing patients every day, with access to a pool of patients and
information. And there are patients and communities, gathering information and
resources, mobilizing to do good work. So, let’s bring them together, each to
amplify the other’s voices and information. Balanced together, that’s how we
get to the end goal.</div>
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<br /></div>
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With small study populations, tight competition for funding,
and competitive donor pools, the smart money is on research that collaborates
with patients and the rare disease community to get the work done. So the
question is, how is that done an authentic way? What is everyone’s role? How do
patients inform research? What lessons can we learn from failures? Are there
resources on how to work with patients and communities? Is research all about
the cures? Or is it about living well with #chronicillness and #raredisease?
Who decides? And how? With <a href="http://www.pcori.org/" target="_blank">PCORI</a> in the US and <a href="http://www.cihr-irsc.gc.ca/e/41204.html" target="_blank">SPOR</a> in Canada, how can
researchers and patient communities leverage resources to work together for
better research impact?</div>
<div class="MsoNormal">
<br /></div>
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Join the #hcldr community of professionals, patients,
clinicians, administrators, lurkers, counselors, social workers, designers, and
advocates! Please join us on Tuesday, Feb 28, 2017 at 8:30pm Eastern (for your
local time click <a href="https://www.timeanddate.com/worldclock/fixedtime.html?msg=Rare+Disease+Research+%E2%80%93+moving+from+Study+Participant+to+Research+Partner&iso=20170228T1930&p1=64&ah=1" target="_blank">here</a>) as we discuss the following topics:</div>
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<ul>
<li>T1: How do we start to overcome barriers to engage the
patient/caregiver community as research partner? What is the role for digital
communication?
</li>
<li>T2: Is there a danger of engaging the ‘same old voices’ or
in other words, how do we ensure diversity of thought?
</li>
<li>T3: “Tear down that wall!” Barriers – there are barriers on
all sides to patient inclusion. How do we address them and overcome them?</li>
<li>T4: How is rare disease a model that can lead healthcare
into patient inclusion in research? Example?<span style="color: black; mso-themecolor: text1;"></span></li>
</ul>
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<h3 class="MsoNormal" style="mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="mso-bidi-font-family: "Times New Roman"; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;">Resources for Further Study</span></h3>
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<span style="mso-bidi-font-family: "Times New Roman"; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;">Links Mentioned in Bio:</span></h4>
<div class="MsoNormal" style="mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<a href="https://www.rarediseasefoundation.org/" target="_blank"><span style="mso-bidi-font-family: "Times New Roman"; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;">Rare Disease Foundation</span></a></div>
<div class="MsoNormal" style="mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<a href="https://patientsincluded.org/" target="_blank"><span style="mso-bidi-font-family: "Times New Roman"; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;">Patients Included</span></a></div>
<div class="MsoNormal" style="mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<a href="http://itdoesnthavetohurt.ca/" target="_blank"><span style="mso-bidi-font-family: "Times New Roman"; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;">ItDoesntHaveToHurt</span></a></div>
<h4 class="MsoNormal" style="mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="mso-bidi-font-family: "Times New Roman"; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;">Main Blog Links:</span></h4>
<div class="MsoNormal" style="mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="mso-bidi-font-family: "Times New Roman"; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"><b>International Rare Disease Day</b> </span><a href="http://www.rarediseaseday.org/"><span style="mso-bidi-font-family: "Times New Roman"; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;">http://www.rarediseaseday.org/</span></a></div>
<div class="MsoNormal" style="mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="mso-bidi-font-family: "Times New Roman"; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"> </span><span style="mso-bidi-font-family: "Times New Roman"; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"> </span></div>
<div class="MsoNormal" style="mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="mso-bidi-font-family: "Times New Roman"; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"><b>1 in 2000</b><span style="mso-spacerun: yes;"> </span></span><a href="http://www.eurordis.org/about-rare-diseases"><span style="mso-bidi-font-family: "Times New Roman"; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;">http://www.eurordis.org/about-rare-diseases</span></a></div>
<div class="MsoNormal" style="mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="mso-bidi-font-family: "Times New Roman"; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"> </span><span style="mso-bidi-font-family: "Times New Roman"; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"> </span></div>
<div class="MsoNormal" style="mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="mso-bidi-font-family: "Times New Roman"; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"><b>1/12 or 1/10 prevalence</b><span style="mso-spacerun: yes;"><b> </b> </span></span><a href="https://www.rarediseasefoundation.org/research"><span style="mso-bidi-font-family: "Times New Roman"; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;">https://www.rarediseasefoundation.org/research</span></a></div>
<div class="MsoNormal" style="mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="mso-bidi-font-family: "Times New Roman"; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"> </span><span style="mso-bidi-font-family: "Times New Roman"; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"> </span></div>
<div class="MsoNormal" style="mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="mso-bidi-font-family: "Times New Roman"; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"><b>NORD Rare Disease Facts</b> </span><a href="http://cdn.rarediseases.org/wordpresscontent/wp-content/uploads/2014/11/NRD-1008-FactSheet_5.pdf"><span style="mso-bidi-font-family: "Times New Roman"; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;">http://cdn.rarediseases.org/wordpresscontent/wp-content/uploads/2014/11/NRD-1008-FactSheet_5.pdf</span></a></div>
<div class="MsoNormal" style="mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="mso-bidi-font-family: "Times New Roman"; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"> </span><span style="mso-bidi-font-family: "Times New Roman"; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"> </span></div>
<div class="MsoNormal" style="mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<span style="mso-bidi-font-family: "Times New Roman"; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"><b>Pursuing Elusive Diagnoses for Rare Diseases</b> </span><a href="http://www.medscape.com/viewarticle/840440"><span style="mso-bidi-font-family: "Times New Roman"; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;">http://www.medscape.com/viewarticle/840440</span></a><span style="mso-bidi-font-family: "Times New Roman"; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman"; mso-font-kerning: 18.0pt;"> </span></div>
<div class="MsoNormal" style="mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; mso-outline-level: 1;">
<br /></div>
<div class="MsoNormal">
<b>EURORDIS Rare Diseases Europe </b><a href="http://www.eurordis.org/about-rare-diseases">http://www.eurordis.org/about-rare-diseases</a><span class="MsoHyperlink"></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black; mso-themecolor: text1;"><b>PCORI Patient-Centered
Outcomes Research Institute</b> </span><a href="http://www.pcori.org/">http://www.pcori.org/</a><u><span style="color: #0563c1; mso-themecolor: hyperlink;"></span></u></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black; mso-themecolor: text1;"><b>Strategy for
Patient-Oriented Research</b> </span><a href="http://www.cihr-irsc.gc.ca/e/41204.html">http://www.cihr-irsc.gc.ca/e/41204.html</a><span style="color: black; mso-themecolor: text1;"> </span></div>
<div class="MsoNormal">
<a href="http://bcsupportunit.ca/">http://bcsupportunit.ca/</a><span style="color: black; mso-themecolor: text1;"></span></div>
<div class="MsoNormal">
<br /></div>
<h4 class="MsoNormal">
<span style="color: black; mso-themecolor: text1;">Additional
Resources:</span><span style="color: black; mso-themecolor: text1;"> </span>
</h4>
<div class="MsoNormal">
<span style="color: black; mso-themecolor: text1;"><b>CORD Canadian
Organization for Rare Disorders</b> </span><a href="http://raredisorders.ca/">http://raredisorders.ca/</a><span style="color: black; mso-themecolor: text1;"></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black; mso-themecolor: text1;"><b>NORD National
Organization for Rare Disorders</b> </span><a href="https://rarediseases.org/">https://rarediseases.org/</a><span style="color: black; mso-themecolor: text1;"></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black; mso-themecolor: text1;"><b>Global Genes</b> </span><a href="https://globalgenes.org/">https://globalgenes.org/</a><span style="color: black; mso-themecolor: text1;"></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b><span style="color: black; mso-themecolor: text1;">Rare Disease
Report </span></b><a href="http://www.raredr.com/">http://www.raredr.com/</a><span style="color: black; mso-themecolor: text1;"></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b>How to read and understand a scientific paper: a guide for
non-scientists </b><a href="http://blogs.lse.ac.uk/impactofsocialsciences/2016/05/09/how-to-read-and-understand-a-scientific-paper-a-guide-for-non-scientists/">http://blogs.lse.ac.uk/impactofsocialsciences/2016/05/09/how-to-read-and-understand-a-scientific-paper-a-guide-for-non-scientists/</a>
</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b>When patients help bridge the knowledge gap in health
research clinical trials </b><a href="https://simondenegri.com/2017/02/24/when-patients-help-bridge-the-knowledge-gap-in-health-research-clinicaltrials-whywedoresearch-proms/">https://simondenegri.com/2017/02/24/when-patients-help-bridge-the-knowledge-gap-in-health-research-clinicaltrials-whywedoresearch-proms/</a>
</div>
<h1>
<b><span style="font-family: Calibri; font-size: 12.0pt; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: minor-latin;"><b>How and why should we
engage parents as co-researchers in health research? A scoping review</b> </span></b><span style="font-family: Calibri; font-size: 12.0pt; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-font-weight: bold; mso-hansi-theme-font: minor-latin;"><a href="http://onlinelibrary.wiley.com/doi/10.1111/hex.12490/full"><span style="mso-fareast-font-family: "Times New Roman";">http://onlinelibrary.wiley.com/doi/10.1111/hex.12490/full</span></a></span><span style="font-family: Calibri; font-size: 12.0pt; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: minor-latin;"> </span></h1>
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isabel jordanhttp://www.blogger.com/profile/01087403575321827122noreply@blogger.com0tag:blogger.com,1999:blog-671730244319076817.post-11419951418896419792016-08-08T21:24:00.001-07:002016-08-09T19:48:23.779-07:00Patient Centred Care - It Begins with Respect<style>
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<div class="MsoNormal">
<span lang="EN-CA" style="mso-ansi-language: EN-CA;">Patient
Experience. Empathy. Patient Engagement. Patient Inclusion. Shared Decision
Making.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-CA" style="mso-ansi-language: EN-CA;">I hear a
lot of buzzwords. And a lot of the time, that’s all they are – buzzwords. I’ll
tell you what I want, not as a ‘e-patient’ or a ‘patient advocate’, but just as
a mom. I want my 14 year old son to leave his 2 hour appointment with his new
doctor excited about the care he’s receiving. And that rarely happens. But last
week it did. Why? What was different?</span></div>
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<br /></div>
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<span lang="EN-CA" style="mso-ansi-language: EN-CA;">In the
words of Inigo Montoya from ‘The Princess Bride’ “</span><span style="mso-bidi-font-family: "Times New Roman"; mso-bidi-font-style: italic; mso-fareast-font-family: "Times New Roman";">Let</span><span style="mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"> me 'splain…No, there
is too much. <span style="mso-bidi-font-style: italic;">Let me sum up</span>…”</span></div>
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<h3 class="MsoNormal">
<span lang="EN-CA" style="mso-ansi-language: EN-CA;">Our names
were respected:</span><span lang="EN-CA" style="mso-ansi-language: EN-CA;"> </span><span lang="EN-CA" style="mso-ansi-language: EN-CA;"> </span></h3>
<div class="MsoNormal">
<span lang="EN-CA" style="mso-ansi-language: EN-CA;">Right from
first handshake, he respected our names. He checked with my son, his patient, how
he likes being referred to and made sure to use that name. Amazingly, I was not ‘mom’! I was Ms. Jordan. I had
a name – like a respected colleague. Even our family members that weren't there – he took the time
to find out their names, to ask the spelling, to check in to make sure that
the had it correct. It seems such a minor point, but if you were going into a
collaborative business meeting, wouldn’t you make sure that you had the names
of your partners right? Would you go into a project with someone who couldn’t
be bothered to figure out which was your first name or last name? Names matter.
Manners matter.</span>
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<div class="MsoNormal">
<br /></div>
<h3 class="MsoNormal">
<span lang="EN-CA" style="mso-ansi-language: EN-CA;">Our
emotional needs were respected:</span></h3>
<div class="MsoNormal">
<span lang="EN-CA" style="mso-ansi-language: EN-CA;">In
recognition that this was to be a long appointment, this new doctor told us
exactly what the agenda of the appointment would be. Of course he knew, but
respecting our needs as partners meant bringing us in the loop so that we could
have a say. And then giving us (giving my son) the power to change
locations/moving/pausing if the appointment became too long. Of course, as with
most people, knowing what was coming next made it easier to tolerate a long
meeting and we were fine with the long appointment time.</span></div>
<div class="MsoNormal">
<br /></div>
<h3 class="MsoNormal">
<span lang="EN-CA" style="mso-ansi-language: EN-CA;">Our
physical bodies were respected:</span></h3>
<div class="MsoNormal">
<span lang="EN-CA" style="mso-ansi-language: EN-CA;">Recognizing
that the clinic is truly the health care provider’s domain is important. And
inviting the patient into it and making us feel comfortable there isn’t something
I’ve ever really thought about before. But at this appointment, this doctor
said, “I’m comfortable, but others find it cold here. We can move to another
room if it is too chilly here. That is no problem”. I don’t think I’ve ever
been asked anything like that at other appointments. Furthermore, before
examining my son, there was always a pause, an explanation, and a request for
permission. Such a small touch, but an indication of respect and partnership
and caring.</span></div>
<div class="MsoNormal">
<br /></div>
<h3 class="MsoNormal">
<span lang="EN-CA" style="mso-ansi-language: EN-CA;">Our stories
were respected:</span></h3>
<div class="MsoNormal">
<span lang="EN-CA" style="mso-ansi-language: EN-CA;">So at the
beginning of the appointment I did what I always do. I shuffled my papers. I
organized my files and I got ready to be as efficient as possible, because I
have been taught to respect the doctors’ time. Amazingly, this is the response
I got (paraphrased) ‘I love data, but before I look at that, I want to hear
your stories. [looking at my son] Your story. [looking at me] And your story.
And then when you hear my story too, perhaps together we can reach some
answers. Not because any of us are telling the truth or a lie, but because each
of us has a different perspective.’ I’m sorry, but has this fellow come to see
my talks or something? Seriously, he was preaching to the choir! My son and I
may have shared a significant look at this point.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-CA" style="mso-ansi-language: EN-CA;">In brief,
we were treated as partners in my son’s care; as respected equals, as
colleagues. I don’t understand why this is both difficult and rare. I didn’t
get the sense we were treated this way because we were special patients. I
believe this is simply how this doctor treats his patients. To put icing on
this already truly fabulous cake, the doctor asked us if we’d like to stay in
contact by email so that we can see how a course of treatment is going and
course-correct if necessary. Imagine. I am immensely grateful to this doctor for this experience. It reminded me of what is possible. We are fortunate because we have several healthcare providers that are doing so many things right. But this appointment, this day, distilled each of those things into one, single appointment. It made me see how important it is to feel respected in all of our interactions with the health care system. It is something we should expect, <i>not</i> be surprised by.</span></div>
<div class="MsoNormal">
<br /></div>
<span lang="EN-CA" style="font-family: "calibri"; font-size: 12.0pt;">Respect. Being treated with manners and grace.
This is simply how I expect my children to treat others. Isn’t this how we
should expect health care providers to treat us as well? <span style="mso-spacerun: yes;"> </span></span>
isabel jordanhttp://www.blogger.com/profile/01087403575321827122noreply@blogger.com4tag:blogger.com,1999:blog-671730244319076817.post-20573424639469653682016-05-22T15:39:00.000-07:002016-05-22T20:31:14.514-07:00And in the end strength and joy will winYou were supposed to be the easy one - my typical child, running around with your friends, the world your oyster, the usual bumps and bruises of childhood. Sure there were those scares of your toddler and pre-school years, but we got past them and decided to forget them.<br />
<br />
But suddenly things changed as the world has suddenly become not your oyster. As you're growing farther from the protected circle of friends who built you up and let you know that your dreams are your reality and you just have to work hard to see them happen. Suddenly the world opens and the monsters of doubters who don't bother knowing you but just see your external shell tell you that you're not good enough that you have to be different, that just for skin that you inhabit you have limits that are not of your own making.<br />
<br />
And we have to patch those wounds and remind you that your dreams <i>are</i> your reality and those who use words to put you down and try to wound you are shadows that pass and you are the solid one who inhabits your life.<br />
<br />
<i>You</i> were supposed to be the easy one but I forgot how hard it was to grow up and that things didn't magically get better and the lessons that I learned can be shared with hugs and with love and with words of power and strength. And that nothing worth getting is gotten easily and <i>no</i>, not everything is easy but you are strong and beautiful and joyful.<br />
<br />
And in the end that joy and strength will win. isabel jordanhttp://www.blogger.com/profile/01087403575321827122noreply@blogger.com2tag:blogger.com,1999:blog-671730244319076817.post-65952137561261676352016-04-30T17:32:00.001-07:002016-05-04T09:57:11.812-07:00A Wish Fulfilled<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpl0rSA4TYCKpFb3W9EYG-dTYO-9CatuFtwYj37lkfxpXD7p2KQ4oR90Ke-j-J_Ipgaa_eVYKKOodDdG0o34yG_X7IpUZfnkL17cjQZeZxnEhhVl4fYCo_NyAX5J3WTtfAJxNPTfq3EQ6o/s1600/IMG_8731.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpl0rSA4TYCKpFb3W9EYG-dTYO-9CatuFtwYj37lkfxpXD7p2KQ4oR90Ke-j-J_Ipgaa_eVYKKOodDdG0o34yG_X7IpUZfnkL17cjQZeZxnEhhVl4fYCo_NyAX5J3WTtfAJxNPTfq3EQ6o/s400/IMG_8731.jpg" width="400" /></a></div>
It
was the most perfect of days - sunny, a light ocean breeze and smooth
sailing ahead. A lot had to come together to make the day happen, and it
was perfect that the weather cooperated to put the finishing touches on
the day.<br />
<br />
Making Zach's Wish come true wasn't a sure
thing. We didn't know until a relatively short while ago that as kid
with no diagnosis, he was even eligible for such a thing. We were so used to falling between the cracks in the system that it would never had
occurred to us that Zach could have a Wish granted. However, not too
long ago, <a href="http://www.childrenswish.ca/en/home/" target="_blank">The Children's Wish Foundation</a> contacted the <a href="https://www.rarediseasefoundation.org/" target="_blank">Rare Disease Foundation</a>
to let us know that they had changed their eligibility requirements. More children in our rare disease community were now eligible to be nominated
for wishes. This news was greeted with great excitement by my friends
and we cheered when one, and then more of our kids were approved for
wishes.<br />
<br />
We were honoured, but tried not to get too
excited when a dear friend in our community nominated our 14 year old
for a wish. Having no diagnosis and no clear prognosis meant that
getting approved wasn't certain, and we didn't want to make any
assumptions. We were beyond thrilled when Zach was approved to get his Wish fulfilled. It has been
a really tough year and thinking of what to wish for was exactly what
he needed.<br />
<br />
The rest of the family tried not to lobby
him too hard for what we wanted. And even if we did, have you ever tried
telling a 14 year old what to do? In the end, Zach's Wish wasn't
surprising. He's wanted to be a marine biologist since he was about
eight or nine years old (before that, he wanted to be a 'scientist of
everything'). Zach decided he'd like to go on a marine biology
adventure. And not just any old marine biology adventure. I had been
following a marine biologist on Twitter, David Shiffman
(@WhySharksMatter), for over a year and sharing what I read with Zach
and his 11 year old sister, Evie. The kids were hooked - stories of
working towards conserving endangered sharks by catching, tagging and
doing the coolest of science? What's not to love? Zach wanted to go tag
sharks with David. I'll say this for Zach - he doesn't think small.
Would Children's Wish Foundation be able to set that up? Would David
Shiffman be available? Twitter had informed me that he was finishing up
his PhD - he had to be a pretty busy guy.<br />
<br />
Unbelievably,
it all came together. Children's Wish Foundation is a spectacular
organization that took care of us so well. They arranged everything to
make our trip go smoothly and make sure Zach's physical needs were taken
care of so that he could really enjoy his Wish. Amazingly, some of our
family that lives in Florida and Alabama were able to meet us there for a
little family reunion. David generously gave of his time and met with
us for dinner before our official Wish adventure. Honestly, the kids
were star struck. And to put the icing on the cake, there was room on
the boat to invite our family along to do some shark science with us on
Wish day. The only thing better than getting a Wish fulfilled, is
getting a Wish fulfilled with family.<br />
<br />
And that brings us to our perfect day.<br />
<br />
We
were team 1: My family (myself, my husband Tyler, our daughter Evie,
and the man of the hour, Zach), my mom (Meema), my brother, José and his
daughter Katelyn.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRxWLWmqfK6LpVBKfSMkb9Yv_ZOMR-703HDoMApcYEBOE6eLszj0GV4WXuTY3bVwmFgrU4zca47_pdCiVPRyyOC35ua5g6qEhWM2rFSqi95dcCJMJUnEk9jRw3QMKiFppeACuRJq18Cmhu/s1600/Family+on+the+shark+boat.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRxWLWmqfK6LpVBKfSMkb9Yv_ZOMR-703HDoMApcYEBOE6eLszj0GV4WXuTY3bVwmFgrU4zca47_pdCiVPRyyOC35ua5g6qEhWM2rFSqi95dcCJMJUnEk9jRw3QMKiFppeACuRJq18Cmhu/s400/Family+on+the+shark+boat.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pics by Jeff Palumbo - <a href="http://sharktagging.com/">sharktagging.com</a></td></tr>
</tbody></table>
<br />
We were told what our jobs were, how to be safe and
what rules to follow. We needed to figure out which job each of us would
do. I know I was feeling excited and nervous and happy. Would we
catch any sharks? Would we be helpful? Would I screw up? Would I ruin
the Science? We divided ourselves up into the jobs that we were allotted
and waited for our chance to jump into the well oiled machine we
intended to be. And hoped not to Keystone Cop our way through it!<br />
<br />
We waited, hoping that at least one shark would be caught... because, you never know, you can't control nature.<br />
<br />
When
the first shark was caught, we sprang into action. It was a nurse
shark! She was beautiful! We all did our jobs and I don't think we
messed anything up. They coached us all through what we needed to do and
this beautiful animal was released back into the ocean with minimal
fuss. As she swam away, Zach threw his arms in the air and shouted "Wish
Fulfilled!"<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixwL6PBIDpNckkUkVgax1jc_aXxxgthaXgmkormAzVex0L1ejRh8vKhdNODW2OeubgQatDp_XUHZlUcXOzgVc4d6iuBub-E0JPwaYwd0ZXkcFINHF0_kdMUQ9189jr6_CPbGl9DZ9_HfBe/s1600/Nurse+shark+workup.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixwL6PBIDpNckkUkVgax1jc_aXxxgthaXgmkormAzVex0L1ejRh8vKhdNODW2OeubgQatDp_XUHZlUcXOzgVc4d6iuBub-E0JPwaYwd0ZXkcFINHF0_kdMUQ9189jr6_CPbGl9DZ9_HfBe/s400/Nurse+shark+workup.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pics by Jeff Palumbo - <a href="http://sharktagging.com/">sharktagging.com</a></td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEir_O7QP5slHSzcgeA3gUlZcigjcuNpZGINOE6uuSbRml-oD3bDdY9YNxPpL1par7OCOcTW8PCQh25e3vvu5BXC0yKQzhH2GQyjkfi4UtWjDglwtG8_29L0C2D_LIx69e2DdVpJKTKzItlN/s1600/IMG_8756.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEir_O7QP5slHSzcgeA3gUlZcigjcuNpZGINOE6uuSbRml-oD3bDdY9YNxPpL1par7OCOcTW8PCQh25e3vvu5BXC0yKQzhH2GQyjkfi4UtWjDglwtG8_29L0C2D_LIx69e2DdVpJKTKzItlN/s400/IMG_8756.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A note from Zach: It meant a lot to me that Children's Wish & the SRC were able to do this for me.</td></tr>
</tbody></table>
<br />
Unbelievably, through the course of
the day 5 different species of sharks were caught, 9 sharks in total. We
knew something special was going on when the biologists on board were
excited!<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5WExrL8_atrOuCwNb4svxzRTRKeN3M_xz7YwoJqKcjEzC0tFORXys425KqS1hoYJKIjsQ7sR5FtXir80BPMX2pYmOLX3FuM89V0NZvelRpEGXZ08M6VMGbLULxkEzdfkytVCQ8gVTKPX9/s1600/sharks+tagged.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5WExrL8_atrOuCwNb4svxzRTRKeN3M_xz7YwoJqKcjEzC0tFORXys425KqS1hoYJKIjsQ7sR5FtXir80BPMX2pYmOLX3FuM89V0NZvelRpEGXZ08M6VMGbLULxkEzdfkytVCQ8gVTKPX9/s400/sharks+tagged.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pics by Jeff Palumbo - <a href="http://sharktagging.com/">sharktagging.com</a><br />
A note from Evie: When I saw the first shark, it was like it was the day was done, I was so happy.<br />
And then we saw so many more! 😃</td></tr>
</tbody></table>
<br />
Our family was thrilled to be part of the action and to be
allowed to actually participate in the data collection activities. The
best part was the intellectual and social generosity of the graduate and
undergraduate students there, as well as the crew on the boat. No
question was ignored and no inquiry was regarded as a waste of time. My
young scientists' curiosity was rewarded with respect and enthusiasm. I
can't say enough about what amazing role models the <a href="http://sharkresearch.rsmas.miami.edu/" target="_blank">SRC</a>
team were to our kids. Their enthusiasm for their work and respect for
each other and what I hope my kids have, whatever they choose to do in
their lives. I'm grateful that Zach chose a Wish that had such an
impact, not only on him, but on his sister and his cousin as well.<br />
<br />
We
don't know what the future will hold. Honestly, who really does? But
this trip let our family do what we enjoy most together and what has
become increasingly difficult lately. We had an adventure. We were
outside together, experiencing something that was totally new to all of
us and learning together. We had the joy of discovery and had it as a
family. Zach's Wish to take part in shark science research was a welcome
break from a daily focus on healthcare management. It was an injection
of fun and curiosity and excitement that I think my kids deserved.<br />
<br />
We
are incredibly grateful to the Children's Wish Foundation, and
especially to our Wish Coordinators, Lindsay and Karin. We are grateful
to our Rare Disease Foundation family for thinking of us and nominating
us. We are also so grateful to David Shiffman for being available for
questions and interaction, especially at such a busy time in his life.
We were so lucky to meet the amazing scientists from the <a href="http://sharktagging.com/" target="_blank">SRC</a> lab on our boat trip; Leila,
Julia (go Canada!), Natasha (viva Brasil!), Emily, Jake, Tim, Kevin and
Jeff. And of course, the amazing Captain Eric and first mate Nick who
took care of us on the water.<br />
<br />
We were told from the
beginning, that there was a chance they might not catch any sharks. It
doesn't happen often, but it can happen - people can't control nature. We were unbelievably lucky on
our Wish day with the number and variety of sharks caught. But what
really made the day were the people, all the people, that came together
to see Zach's "Wish Fulfilled", thank you all.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirFdbnxhQ46R03wMN3xofKMDnyhUS7zAXtw0kcIRk3R2MffObpL8cEQt8NSzSRj19MxUQ45pRsfIemLeQLQRUp8PTb3DCmS7FfSgP_mHvYDnrUJAwMws9fH8qjDdmYu15slc_glQdKPa1c/s1600/p1040819.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirFdbnxhQ46R03wMN3xofKMDnyhUS7zAXtw0kcIRk3R2MffObpL8cEQt8NSzSRj19MxUQ45pRsfIemLeQLQRUp8PTb3DCmS7FfSgP_mHvYDnrUJAwMws9fH8qjDdmYu15slc_glQdKPa1c/s400/p1040819.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pics by Jeff Palumbo - <a href="http://sharktagging.com/">sharktagging.com</a></td></tr>
</tbody></table>
isabel jordanhttp://www.blogger.com/profile/01087403575321827122noreply@blogger.com0tag:blogger.com,1999:blog-671730244319076817.post-50203502929124667422016-03-31T21:52:00.000-07:002016-03-31T21:55:55.203-07:00A Personal Orchestra - beautiful music or discordant noise?<style>
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<br />
<div class="MsoNormal">
I stand in front of a virtual orchestra. My musicians are
doctors, nurses, occupational therapists, paediatric dentists,
physiotherapists, office assistants, booking clerks, and health technicians.<span style="mso-spacerun: yes;"> </span>The orchestra has also included Speech and
Language Pathologists, a variety of specialty teachers, classroom teachers,
Infant Development specialists, and researchers. Each section of my orchestra
has had turnover, with new members replacing old, new kinds of specialists
coming in and leaving, but always an echo of their presence remains.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In the meantime, I am meant to conduct these musicians.
Their instruments are their tests, their knowledge, their hands, their work.
The scores they play from are their reports, the test result placed in front of
them. Each of them are sitting there, on their own, quite often sublimely unaware
that they are but a small part of a greater musical endeavour. I try to weave
meaning and music from their parts into the greater whole that is my son’s life
– taking what I can from each appointment, meeting, therapy, and class. I interpret
what I learn in one area and adapt, explain as I move on to the next musician.
Always hoping that I can communicate for them. Always hoping that as a conduit
I’m doing enough.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Wonderfully, amazingly, some try to hear the music coming
from their neighbours to make sense of it together. Others just keep playing as
if they are soloists, a Diva come to the concert to play at centre stage.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And there I am, madly waving my arms, my virtual baton
whirling, whirling, trying to pull the pieces together. Conducting them as if
they are my orchestra, yet their music, the scores from which they read are
often a mystery to me. I ask them to share with me and some do happily,
willingly: Others begrudgingly and some, not at all.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And still my baton twirls, and whirls, because there isn’t
anyone else to try to make this orchestra work. And my son deserves that we
find a way to make some beautiful music out of this cacophony of sound. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Pulling this orchestra together is my job. But it could be
made so much easier if information sharing was facilitated through an
accessible health record. A common musical score, if you will. If there was a
shared recognition that a patient with complex medical needs lives a complicated
life – and scheduling that life requires respect and empathy. For the sake of
argument, the recognition that everyone is a part of a larger team (or
orchestra) that involves those in and out of the health care environment. Finally,
I know that no-one will ever advocate for our son as much as much as my husband
and I do, but the expectation that we are the sole information conduit through
the health care system is ridiculous. This should not be how we optimise health
care for those most vulnerable and compromised.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We can make better music than this.</div>
isabel jordanhttp://www.blogger.com/profile/01087403575321827122noreply@blogger.com0tag:blogger.com,1999:blog-671730244319076817.post-71655887438464787252016-03-15T19:14:00.001-07:002016-03-15T19:14:32.318-07:00My plea to the attendees of the #hcsmca National Symposium: Patients are more than our stories
<style>
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<h3 class="MsoNormal">
<span style="font-size: large;"><span style="font-family: inherit;">#PatientsIncluded – Once more with feeling…</span></span></h3>
<div class="MsoNormal">
<span style="font-size: large;"><span style="font-family: inherit;">I am more than my story. This is something that I know and
the strength of my participation in #PatientsIncluded conferences. However, too
often, when patients and caregivers are included in conferences, they are
pigeon-holed into the touching or moving portion of a panel that is meant to
illustrate ‘why we are all here’.
</span></span></div>
<span style="font-size: large;"><span style="font-family: inherit;">
</span></span><br />
<div class="MsoNormal">
<span style="font-size: large;"><span style="font-family: inherit;">#PatientsIncluded moves the needle so that real dialogue can
happen. By ensuring the participation of patient voice from the planning
stages, to having multiple voices throughout conference sessions, interaction
between patients, providers and researchers can be fostered. Suddenly, patients
or caregivers are more than their stories, we are thoughtful members of the
healthcare system, or research team. We provide perspectives that bring insight
to areas that were previously obscured.</span></span></div>
<span style="font-size: large;"><span style="font-family: inherit;">
</span></span><br />
<span style="font-size: large;"><span style="font-family: inherit;">
</span></span><br />
<div class="MsoNormal">
<span style="font-size: large;"><span style="font-family: inherit;">To me this is beauty.</span></span></div>
<br />
<h3 class="MsoNormal">
<span style="font-size: large;"><span style="font-family: inherit;">My Patient Voice in planning required some patience...</span></span></h3>
<div class="MsoNormal">
<span style="font-size: large;"><span style="font-family: inherit;">The #hcsmca National Symposium gave me my first opportunity
to be on the organizer side of a conference, instead of just on the presenter/participant
side. For me this was a welcome opportunity but it did present some challenges
that I didn’t anticipate.</span></span></div>
<span style="font-size: large;"><span style="font-family: inherit;">
</span></span><br />
<span style="font-size: large;"><span style="font-family: inherit;">
</span></span><br />
<div class="MsoNormal">
<span style="font-size: large;"><span style="font-family: inherit;">Driving change is hard. Our scholarship opportunities for
patients and caregivers depended on sponsors also embracing the
#PatientsIncluded philosophy. We had some great sponsors who saw the benefit of
coming on board, but this concept of partnership and engagement will require
more conference sponsors to embrace the importance of engaging the patient and
caregiver participant – and backing it with sponsorship dollars.</span></span></div>
<span style="font-size: large;"><span style="font-family: inherit;">
</span></span><br />
<span style="font-size: large;"><span style="font-family: inherit;">
</span></span><br />
<div class="MsoNormal">
<span style="font-size: large;"><span style="font-family: inherit;">Between you and me – I am often not always the most reliable
committee member. I want to be, but our changing healthcare challenges mean that
their demands can be urgent and erratic. My meeting attendance can suffer from
last minute cancellations and getting my input and participation requires more
work than is usual. I was initially worried this would mean that the patient
perspective would be missed in the planning stages. However, it became clear
that the rest of the #hcsmca planning team valued the concept of
#PatientsIncluded as much as I did and accommodations were made to seek out my
opinions even when healthcare had to become a priority. </span></span></div>
<span style="font-size: large;"><span style="font-family: inherit;">
</span></span><br />
<span style="font-size: large;"><span style="font-family: inherit;">
</span></span><br />
<div class="MsoNormal">
<span style="font-size: large;"><span style="font-family: inherit;">Could we have done better? I believe so. It was a lot of
pressure on me to be the sole patient voice on the organizing committee. I was
honoured to be that voice, but I underestimated the competing pressures of my
home life and wanting to do a stand up job in representing the patient community.
While this committee was amazing at making sure that there were ways for me to
contribute despite my constraints, I’m not sure every committee would do the
same. In the future, my suggestion would be to have 2 patient reps on any
#PatientsIncluded organizing committee. Life is simply too erratic and one
healthcare crisis can take representation down to zero all too easily. </span></span></div>
<div class="MsoNormal">
<br /></div>
<h3 class="MsoNormal">
<span style="font-size: large;"><span style="font-family: inherit;">#hcsmca Symposium – How #PatientsIncluded influenced
outcomes…</span></span></h3>
<h3 class="MsoNormal">
<span style="font-size: large;"><span style="font-family: inherit;"> </span></span></h3>
<span style="font-size: large;"><span style="font-family: inherit;">When all was said and done, we had 12 self-identified
patient/caregiver attendees at the 1-day #hcsmca National Symposium. It was a
room filled with communicators, administrators, physicians, nurses, social
workers, and researchers. And I’m probably missing some other categories of
attendees. I’m sure that many (most?) of them had never interacted with patient
advocates in a conference or problem solving context before, so I was very
curious to see how it was going to go. Because as I said, we are so much more
than our stories. We can start with our stories. Our stories inform our
experiences, but we were there for so much more than that.
</span></span><br />
<span style="font-size: large;"><span style="font-family: inherit;">
</span></span><br />
<div class="MsoNormal">
<span style="font-size: large;"><span style="font-family: inherit;">So here is my take home… at the end of a very full day of day
of talks, plenaries, and unconference problem-solving interactions, conference
participants crowdsourced the top 10 system-busting ideas. Out of those top 10
ideas, 4 of them were centred on acknowledging the wisdom of patient caregiver
knowledge (summarized beautifully by <a href="https://cyhealthcommunications.wordpress.com/2016/03/08/the-top-10-best-ideas-from-the-hcsmca-symposium/" target="_blank">Colleen Young</a>). </span></span></div>
<span style="font-size: large;"><span style="font-family: inherit;">
</span></span><br />
<div class="MsoNormal">
<span style="font-size: large;"><span style="font-family: inherit;">Let’s think about this for a moment. The vast majority
conference attendees were not patient advocates. Yet 4 of 10 top 10 ideas were
centred around patient advocacy key messages. Would this have happened without
#PatientsIncluded patient voices? What if we had had more sponsorship to allow
for even more patient voices and more interaction between patients and health
care professionals? </span></span></div>
<span style="font-size: large;"><span style="font-family: inherit;">
</span></span><br />
<span style="font-size: large;"><span style="font-family: inherit;">
</span></span><br />
<div class="MsoNormal">
<span style="font-size: large;"><span style="font-family: inherit;">I truly believe beauty lies in the interaction between and
within those places that were separate before – new ideas, new perspective,
perhaps even fresh understanding. Healthcare need so much more of this. And not
just at conferences.</span></span></div>
<br />
<h3 class="MsoNormal">
<span style="font-size: large;"><span style="font-family: inherit;">So this is my plea to the 170 or so attendees of the #hcsmca
National Symposium… </span></span></h3>
<br />
<ul>
<li><span style="font-size: large;"><span style="font-family: inherit;">Please, please, remember what we did there.</span></span></li>
<li><span style="font-size: large;"><span style="font-family: inherit;">Remember the beauty of including everyone’s perspective and
take it beyond the #hcsmca conference experience.</span></span></li>
<li><span style="font-size: large;"><span style="font-family: inherit;">Don’t ever assume you know what the patient or caregiver
knows or wants or experiences. We are here for the asking. So ask.</span></span></li>
<li><span style="font-size: large;"><span style="font-family: inherit;">Whenever you’re talking about patients, make sure you’re
talking with patients. Take the principles of #PatientsIncluded and include us
in an authentic way. This is the path to better healthcare.</span></span></li>
<li><span style="font-size: large;"><span style="font-family: inherit;">We are so much more than our stories.</span></span></li>
</ul>
<span style="font-size: large;"><span style="font-family: inherit;">
</span></span><br />
<h4 class="MsoNormal">
<span style="font-size: large;"><span style="font-family: inherit;">And take to heart the number one rated idea that came out
the #hcsmca Symposium and ‘Proceed Until Apprehended’. We’ll be right there
with you. Beside you.</span></span></h4>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><span style="font-size: large;"><span style="font-family: inherit;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgi4pNhw7TpxWoTxfDVhJvRXdpKaUzlou6VLI6pEAGIK3epAOW6q9lSRGYoeBazkX-EGZ8owwWJAvFNPSRm_Gxxv-Wtoq37ohCHDt1_nuVQeZjD6PcjbYO9_334JqdJGtAYhQ-G5NCeIWwy/s1600/21stops-20160224-HCSMCA-Symposium-0418.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgi4pNhw7TpxWoTxfDVhJvRXdpKaUzlou6VLI6pEAGIK3epAOW6q9lSRGYoeBazkX-EGZ8owwWJAvFNPSRm_Gxxv-Wtoq37ohCHDt1_nuVQeZjD6PcjbYO9_334JqdJGtAYhQ-G5NCeIWwy/s640/21stops-20160224-HCSMCA-Symposium-0418.jpg" width="425" /></a></span></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: large;"><span style="font-family: inherit;">Photo by Mike Savage/<a href="http://work.21stops.com/" target="_blank">21 Stops</a></span></span></td></tr>
</tbody></table>
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<br /></div>
<span style="font-size: large;">
</span>isabel jordanhttp://www.blogger.com/profile/01087403575321827122noreply@blogger.com4tag:blogger.com,1999:blog-671730244319076817.post-20455021209686450672016-01-29T13:17:00.000-08:002016-01-29T13:17:03.522-08:00Why the #hcsmca Symposium is Patients Included<span style="font-weight: 400;"><i>This post was originally posted on <a href="https://cyhealthcommunications.wordpress.com/2016/01/29/why-the-hcsmca-symposium-is-patients-included/" target="_blank">Colleen Young's blog</a> on January 29 2016.</i></span><br />
<span style="font-weight: 400;"> </span><br />
<span style="font-weight: 400;">For me, being involved in #hcsmca
exposes me to an incredible diversity of voices. These voices include
patients, caregivers, healthcare providers, researchers and healthcare
communicators, and others who can’t be easily pigeon-holed into clear
categories.</span><br />
<span style="font-weight: 400;">Weekly conversations punctuated by
commentary throughout the week has allowed me to make connections, some
of them very strong, with people that I simply would never have gotten
to know. What’s more, I believe that we have all been able to expand
each other’s view of the realities of our healthcare system, providing
care and living with health conditions. Social media let us speak to
each other plainly, concisely and connect meaningfully. It doesn’t
matter that you are at work, taking a break between patients or clients
and that I am at home looking after my son wondering when I will hear
from one of his health care providers next. We are all, together, having
a conversation about the meaning of better health care and community;
titles, jobs, heck, time of day, fall by the wayside.</span><br />
<span style="font-weight: 400;">However, in the world of conferences
and in person events, it’s tougher. For too long those health care
conversations have been held about patients but not with patients. To be
frank, if we are going to get to the solutions that work best to
improve health care, we can’t afford to not to include the voices of
patients and caregivers. We hold a wealth of knowledge and experience
that we want to offer, and we don’t want to be kept outside closed
doors. </span><br />
<span style="font-weight: 400;">Even with the best of intentions, it
can be difficult for conference organizers to make their events
inclusive of patients and caregivers. It takes more than just saying,
“hey everyone, come on in.” Patients and caregivers face real and
systemic barriers to attending medical conferences, not just cultural
ones.</span><br />
<span style="font-weight: 400;">Recognizing these barriers, the </span><a href="http://patientsincluded.org/"><span style="font-weight: 400;">Patients Included charter</span></a><span style="font-weight: 400;">
was created to help conference organizers structure their events to
welcome and integrate patients and caregivers from planning, to speaking
and attending. The Patients Included charter outlines 5 clauses
facilitating authentic patient participation – patient participation
that is meaningful and will make the conference better for all
participants.</span><br />
<img alt="PatientsIncludeCharterClauses" class=" size-full wp-image-3995 aligncenter" src="https://cyhealthcommunications.files.wordpress.com/2016/01/patientsincludecharterclauses.png?w=600" /><br />
<span style="font-weight: 400;">The </span><a href="http://patientsincluded.org/"><span style="font-weight: 400;">5 charter clauses</span></a><span style="font-weight: 400;">
are the starting point to get patients in the door. And I say starting
point because I think that once conference organizers start including
patients, they’ll recognize the value and grow that inclusion in
subsequent years.</span><br />
<span style="font-weight: 400;">Deciding to take the online #hcsmca model offline to a </span><a href="http://qualityforum.ca/pre-forum-sessions/national-hcsmca-symposium-for-health-care-digital-communication/"><span style="font-weight: 400;">National #hcsmca Symposium</span></a><span style="font-weight: 400;"> is incredibly exciting. And we made sure we met all 5 clauses:</span><br />
<ol>
<li style="font-weight: 400;"><span style="font-weight: 400;">I, as a caregiver, am a member of the Symposium Planning Committee. Patients reviewed the </span><a href="https://cyhealthcommunications.wordpress.com/2015/11/06/announcing-scholarship-applications-for-hcsmcas-national-symposium-feb-24-2016/"><span style="font-weight: 400;">scholarship applications</span></a><span style="font-weight: 400;">. The event is an </span><a href="https://cyhealthcommunications.wordpress.com/2016/01/17/how-to-unconference-hcsmca-style/"><span style="font-weight: 400;">unconference</span></a><span style="font-weight: 400;">. All attendees are involved in the planning and design. </span></li>
<li style="font-weight: 400;"><span style="font-weight: 400;">Patients and caregivers are attending, speaking and leading sessions at the symposium.</span></li>
<li style="font-weight: 400;"><span style="font-weight: 400;">Scholarships
were awarded to 2 patients, 2 caregivers and 2 students. Travel and
accommodations have been arranged and paid for. With additional </span><a href="https://qualityforum.ca/pre-forum-sessions/hcsmca-symposium-sponsorship-opportunities/"><span style="font-weight: 400;">sponsorship</span></a><span style="font-weight: 400;">, we will add more scholarships.</span></li>
<li style="font-weight: 400;"><span style="font-weight: 400;">Accommodations will be made where necessary.</span></li>
<li style="font-weight: 400;"><span style="font-weight: 400;">The main
stage will be livestreamed. Virtual participants can also follow
#hcsmca. Notes and pictures from the break-out session will be
open-access.</span></li>
</ol>
<span style="font-weight: 400;">For the #hcsmca community, Patients
Included recognizes what we already know – patients and caregivers are
valuable contributors to our diverse community. Sure, those that attend
benefit, but really, the whole community benefits from their inclusion.
Even if I, as a caregiver, say so myself.</span><br />
<span style="font-weight: 400;">Don’t miss this event.</span>isabel jordanhttp://www.blogger.com/profile/01087403575321827122noreply@blogger.com0tag:blogger.com,1999:blog-671730244319076817.post-55149156107583043972015-12-08T12:33:00.000-08:002015-12-10T13:41:18.098-08:00Schrödinger’s waiting room<style>
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Diagnosed. And not diagnosed. Simultaneously. Positive and
negative test result at the same time. We are Schrödinger’s cat. Over and over
again we have been in the same position, and I think it may actually be getting
harder, or at least more perverse.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It the classic physics thought experiment, the cat in the
box is both alive and dead at the same time until it is observed. I’ll let you
Google the idea. I’m not a physicist and don’t think I can do it justice (truth
be told, I ran away to Christmas break 24 hours before my 1<sup>st</sup> term
physics exam at university when I found out I could take 2 stats courses
instead). But the idea of this state of unobserved being and not being has
stuck with me. Who knew it would be so relevant to our life.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The past 13 years have brought about so. many. tests. And
yielded so few answers. And with every one, after every one we end up
Schrödinger’s cat – in this state of being and not being. At the same time, in
my mind the result is both positive and negative (or inconclusive)
simultaneously until the results are observed. Or at least observed by the
doctor and then by us in the blessed follow up appointment, whenever that may
be.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The waiting. Oh the waiting. The state of flux during the
waiting. It’s been thirteen years of testing and waiting and being and not being.
Thinking every time that this might be the answer.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’m no fool. The hope is squashed down into a tiny place and
not allowed to come out to play any more. I pretend a state of calm, of waiting
peacefully with no expectation. Am I fooling anyone? </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Really it’s a state of diagnosis and non diagnosis
simultaneously. It’s the best I can do; both states existing, side-by-side,
vying for space in Schrödingers waiting room. Waiting for an answer.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGjE9zDk7jgaOWcNt5Z22zSe5e6t_2EIovFH9Ozgqbx744gAb4RGoNMu_-4URE5OqcHx2so6AqeQBBa3Nqt1rDxtKUZZLwaj2xNxKRe-UFECyAmYrS3C3vOiVFkcHZa4zoYEGyBotU2AtS/s1600/forest+path.jpg" imageanchor="1"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGjE9zDk7jgaOWcNt5Z22zSe5e6t_2EIovFH9Ozgqbx744gAb4RGoNMu_-4URE5OqcHx2so6AqeQBBa3Nqt1rDxtKUZZLwaj2xNxKRe-UFECyAmYrS3C3vOiVFkcHZa4zoYEGyBotU2AtS/s320/forest+path.jpg" width="240" /></a> </div>
isabel jordanhttp://www.blogger.com/profile/01087403575321827122noreply@blogger.com2tag:blogger.com,1999:blog-671730244319076817.post-29801734968764059262015-10-28T09:42:00.002-07:002015-10-28T09:45:30.652-07:00Patient Engagement? I think it’s time to Just Ask<style>
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Why is asking for help so hard? Many of us don’t want to appear foolish or look like we actually need help. Maybe we don’t want to make
ourselves appear vulnerable for rejection. Asking for help means putting
ourselves in a position of weakness, and for those who have always been calling
the shots, this can be hard. For those who are in charge of healthcare
decisions, admitting that they don’t have the answers, I’m sure, is a scary
place to be. But it’s time to start.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And really, although I understand that implementation can be
difficult, I think that everyone is overthinking this. Everyone is so busy
trying to figure out the perfect way to ‘engage patients’, that it’s not
happening. It’s time to go back to what most of us were taught (I hope) when we
were growing up. Here are my personal hints on how to go forward</div>
<ol>
<li>If you don’t know the answer to a question, don’t pretend
that you do.</li>
<li>Ask questions to new groups of people that have
new perspectives on a problem.</li>
<li>When you ask people to join a team, treat them with respect.
This means that they have to be fully integrated team members, not
afterthoughts.</li>
<li>If patients are going to be included in a fully authentic way,
then the unique limitations on their time, budget and energy has to be accommodated
in their engagement opportunity.</li>
<li>Patient voices must have the same authority and
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<span style="font-family: Cambria; font-size: 12.0pt; mso-ansi-language: EN-CA; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: "MS 明朝"; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-fareast; mso-hansi-theme-font: minor-latin;">power as every other team member.</span></li>
<li><span style="font-family: Cambria; font-size: 12.0pt; mso-ansi-language: EN-CA; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: "MS 明朝"; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-fareast; mso-hansi-theme-font: minor-latin;">Ultimately, if health care providers/administrators/researchers have questions on how to proceed and engage patients, the best way forward is to just ask us. We're all right here. </span>
</li>
</ol>
<div class="MsoNormal">
And for goodness sake, one patient on one committee isn’t engagement.
Representation requires a diversity of voices in a diversity of roles. This is how we get to new
solutions in healthcare. Everyone working together. We’re going to disagree. It’s
how we’re given the opportunity to both agree and disagree that’s going to make a difference. </div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDHt7nts1dWEbNwTTDinB5xTaYmd-KkvhzfgeAzEmS8mBkQtpWtd8wN4rJ6OOdX41FkDiNeDc5zm0FFjTkd1LHDVBooP5W9hzQBOOLON2UONSJ2k0ubpUWEKm1a3LEO7rvIfqEgNMTNAEN/s1600/IMG_4839.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDHt7nts1dWEbNwTTDinB5xTaYmd-KkvhzfgeAzEmS8mBkQtpWtd8wN4rJ6OOdX41FkDiNeDc5zm0FFjTkd1LHDVBooP5W9hzQBOOLON2UONSJ2k0ubpUWEKm1a3LEO7rvIfqEgNMTNAEN/s320/IMG_4839.jpg" width="319" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Chase the Dog Says "It's time to Just Ask"</td></tr>
</tbody></table>
isabel jordanhttp://www.blogger.com/profile/01087403575321827122noreply@blogger.com11tag:blogger.com,1999:blog-671730244319076817.post-87176302484152162092015-09-11T18:21:00.001-07:002015-09-11T18:52:44.889-07:00A little bit on collaboration...<style>
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<br />
<div class="MsoNormal">
I’ve been thinking a lot about collaboration lately. I’ve
just finished one collaborative project, am in the middle of a couple of other
projects and a part of a few other, ongoing collaborative efforts.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Of course, not all my attempts at collaboration are a
success. Sometimes I fall on my face and sometimes things fizzle out.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I think it all circles back to communication. When efforts have
worked out, the communication was easier, and when it wasn’t easy, at least it
was open and honest. And when mistakes were made, the assumptions on both ends
was that they were been mistakes, not intentional misdeeds.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Not all collaborations can work out – hey, I know I can’t
get along with everyone. And certainly I’m as guilty as the next person of misinterpreting
intent, putting my ego too much in the game, and letting both those things get
in the way of the flow of communication. But I am really proud of this piece
that I worked on with <a href="http://suerobins.com/" target="_blank">Sue Robins</a> for <a href="http://bloom-parentingkidswithdisabilities.blogspot.ca/" target="_blank">Bloom</a>, (the blog for Holland Bloorview Kids
Rehabilitation Hospital), all about how the parent voice can be heard when we need
to collaborate with our kids’ health professionals (<a href="http://bloom-parentingkidswithdisabilities.blogspot.ca/2015/09/i-felt-so-small-parent-tips-on-how-to.html" target="_blank">‘I felt so small:’ Parent tips on speaking up with specialists</a>).</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b>What I liked about this collaboration</b>: I’ve never really
written a piece with anyone before. I see Sue as a writing mentor as well as
someone who has had similar, but not identical, experiences in healthcare. It was
great to generate ideas together and to turn what is usually a solitary experience for me (writing)
into a shared experience.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
What are your ideas on collaboration? How have they worked out for you? Do you have solid tips? Do you groan or get giddy with excitement when embarking on a collaborative project?<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikJWq5axxrauZiyo-HuXLoqWiAgTdKIoZYdg-rMzfsuFZy9Y6xp_xer2X86qoB4Rg_YEqJI0pYDzOGeLYejMjH7GEvNVbrEr0ElXNhyphenhyphenaWqvVl7e90nUDh2PjZuaV7FvBpqRqc8iWcS5oqU/s1600/IMG_6078.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="" border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikJWq5axxrauZiyo-HuXLoqWiAgTdKIoZYdg-rMzfsuFZy9Y6xp_xer2X86qoB4Rg_YEqJI0pYDzOGeLYejMjH7GEvNVbrEr0ElXNhyphenhyphenaWqvVl7e90nUDh2PjZuaV7FvBpqRqc8iWcS5oqU/s320/IMG_6078.jpg" title="" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Collaborating to move forward together</td></tr>
</tbody></table>
</div>
isabel jordanhttp://www.blogger.com/profile/01087403575321827122noreply@blogger.com2tag:blogger.com,1999:blog-671730244319076817.post-49670117385953111652015-07-27T12:40:00.000-07:002015-07-27T12:40:41.765-07:0015 Random Things About Me…
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I’ve never done a blogging challenge before, but reading <span style="mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><a href="http://myheartsisters.org/2015/07/26/15-random-facts-about-me/" target="_blank">CarolynThomas</a> @heartsisters and <a href="https://generationsofcaring.wordpress.com/2015/07/27/15-little-known-facts-about-me-challenged-by-my-blogger-buddies/" target="_blank">Natrice Rese</a> @NatriceR wonderful posts on #15randomthings about them made me want
to know #15randomthings about so many of the people I follow and read. It’s the
random little bits that let you get to know your friends.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">So, in that spirit… here are 15 random
things about me:</span></div>
<div class="MsoNormal">
<br /></div>
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<ol>
<li><span style="mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">I am a naturalized citizen. I was born
in Portugal and came to Canada when I was 5. Growing up I did everything I
could to make myself as ‘Canadian’ as possible. I wanted to be as much like
everyone else as I could possibly be. I bemoaned the fact that there were no keychains or pencils with
the name ‘Isabel’ on them and that no-one could pronounce my very Portuguese
last name. It was only as an adult, and especially as a parent, that I’ve come
to realize how important my Portuguese heritage is to me. That so much about me
is Portuguese and that I am so grateful for that and that I hope I pass down
those values to my kids.</span></li>
<li><span style="mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">As a kid I was bullied. And worse than
that, excluded. I spent a long time not fitting in and despairing in sadness. I
thought that it would never get better. School was so, so difficult. The
academic part was easy and I spent my time getting lost in books and learning
as an escape but it seemed that the more I escaped, the less I fit in. And
again, once I grew up, the things that were difficult, were the parts that made
me happy and whole. There’s a lesson in that, I think.</span></li>
<li>
<span style="mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">University was a special kind of
freedom for me. I was off on my own where I found my people… Really, there were
hundreds of people that all wanted to find out about how and why the world
works the way it does? It was magic. It’s weird. I’m finding the same kind of
community on Twitter.</span></li>
<li><span style="mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">I love the water. Being on any kind of
watercraft; sailboat, powerboat, innertube, paddleboard, I don’t care put<span style="mso-spacerun: yes;"> </span>me on anything on the water and I’m happy.
Does anyone want to buy me a boat?<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikHQJ0-k8-dZbFUzsBfoQcqim5LcPJb3xX4IGyZmS4rE5W6MKJG5eUh9otQ4ruYwfa49_U8WFNytPTCTGrVRc9T4WCfxXAxB5IXi8F5OHCDFshRbQ3_kiCzZQr5vjWzkUQN82Y2JHAv0HX/s1600/IMG_6246.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikHQJ0-k8-dZbFUzsBfoQcqim5LcPJb3xX4IGyZmS4rE5W6MKJG5eUh9otQ4ruYwfa49_U8WFNytPTCTGrVRc9T4WCfxXAxB5IXi8F5OHCDFshRbQ3_kiCzZQr5vjWzkUQN82Y2JHAv0HX/s320/IMG_6246.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My beloved SUP - a Christmas gift from my husband</td></tr>
</tbody></table>
</span></li>
<li><span style="mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">I don’t feel like a meal is done until
I’ve had a little bite of something sweet. That isn’t to say I have dessert
every day, but I WANT dessert every day. Oh well.</span></li>
<li><span style="mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">I’ve spent time in Africa before the
age of five but I don’t remember nearly enough and I’d like to go back.</span></li>
<li><span style="mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">Pretty things make me happy. If I buy a
plain notebook and a sparkly one, I’ll use the sparkly one. It took me an
inordinate amount of time to figure that out. I’ve wasted a lot of money on
plain notebooks I didn’t use.</span></li>
<li><span style="mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">I colour code my family calendars. We
may be over-scheduled.</span></li>
<li><span style="mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">My lists almost always contain the item
‘make a list’ so that I can always cross one thing off.</span></li>
<li><span style="mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">I love to travel and see new things and
taste new foods. In fact, tasting new foods and taking new photos may be why I
like to travel. My husband and I once took 3 months to travel the East Coast of
Canada. We didn’t have a lot of money and we used the ‘Lonely Planet’
guidebook. We often chose where to go based on good food recommendations (among
other things of course – but there was this one place with cinnamon buns –
WOW!)<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYGcuZAXIEbsjsjImiXwIbtHTWS2DEh2i_X1vikZ_Ul4cYe9D060PoxSDGqmTncM7y414Csal8rB4Q1dT6RrU_-LcuiREXJ6XYLixk2P17ct5OHaWpeDw-ocZXeUfh8Mdz6QdEIpauSnkq/s1600/paris+street.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYGcuZAXIEbsjsjImiXwIbtHTWS2DEh2i_X1vikZ_Ul4cYe9D060PoxSDGqmTncM7y414Csal8rB4Q1dT6RrU_-LcuiREXJ6XYLixk2P17ct5OHaWpeDw-ocZXeUfh8Mdz6QdEIpauSnkq/s320/paris+street.JPG" width="198" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A street in Paris - a scene from my honeymoom</td></tr>
</tbody></table>
</span></li>
<li><span style="mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">I got my first SLR from my dad when I
was 16. It was a manual Chinon with a variety of lenses but I loved by 70-210
lens with macro. It had been my dad’s as a youth and he taught me how to use
it. I loved that camera and I loved taking photos with it. I don’t think I’ve
ever loved a camera as much as I loved that one.</span></li>
<li><span style="mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">Technology makes me happy. Ok, sure, it
frustrates me. When my devices don’t work, or I can’t figure them out, I’m fit
to be tied, but when I can figure out how to do something or I get a shiny new
toy and can make it work I feel like I’m IN THE FUTURE!</span></li>
<li><span style="mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">If I don’t have two or three unread
books in the queue I get kind of stressed out. I need reserve books. I think
that’s kind of weird. I’m a bit better now that there are e-books and I can
just get more or take out a new one, but what if the internet goes down and I
can’t get a new one and I run out of things to read?</span></li>
<li><span style="mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">I love to downhill ski, but it’s
something I’ve come to as an adult. I actually grew up playing hockey (does
this count as two things?) and skiing was something I would (grudgingly) do if
there was no hockey tournament/game/practice. I was always to cold and my feet
always hurt. Hey it was Eastern Ontario, what do you expect. I tried skiing
again when my kids were young because of where we live and because it was a
sport we thought would give our son some freedom. I only went to support my
kids. I was NOT looking forward to it. Who knew? I LOVE it! I think I’m
probably the biggest fan in the house now. The freedom! The speed! Plus now, I
have better boots and gear.<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4N9LK0H0I8BhQEJU9oZz_I9D9eSFYbmEt4kc7Cbw0q9oaZ_83MkzYeNHhuv4Di0tO10u-4qnvTiqMfpC_cYjVhi-GLzPAhbMezG_7aFWwZw3wy-_BQw72H8sTKMvKReZ0Ur6Mt3imCA8X/s1600/IMG_1295_3.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4N9LK0H0I8BhQEJU9oZz_I9D9eSFYbmEt4kc7Cbw0q9oaZ_83MkzYeNHhuv4Di0tO10u-4qnvTiqMfpC_cYjVhi-GLzPAhbMezG_7aFWwZw3wy-_BQw72H8sTKMvKReZ0Ur6Mt3imCA8X/s320/IMG_1295_3.jpg" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sweet, beautiful 'me' time on my local mountain</td></tr>
</tbody></table>
</span></li>
<li>I need to start buying more ‘grown up clothes’ but I keep
slipping into buying more ‘ironic’, ‘nerd’ and ‘sciencey’ t-shirts. What can I
say? They’re fun. The kids keep trying to steal them, though.<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiclLYQGXtHVkjzSwhSVsKXr82cOpcDLPgZIrlEeSZcXWekRE5kCkJW3r2oet1Jy0Q40fMA9xTZIjdI_5Kmr4gUYLXe09eWwIwXxcH9lMh1FQEEvnjWth7jbNvZEPxeE5efRRVbsz27dSk-/s1600/FullSizeRender.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiclLYQGXtHVkjzSwhSVsKXr82cOpcDLPgZIrlEeSZcXWekRE5kCkJW3r2oet1Jy0Q40fMA9xTZIjdI_5Kmr4gUYLXe09eWwIwXxcH9lMh1FQEEvnjWth7jbNvZEPxeE5efRRVbsz27dSk-/s320/FullSizeRender.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A small sampling of my collection - it's laundry day</td></tr>
</tbody></table>
</li>
</ol>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So there you have it, today's random things. I'm sure if I wrote this another day, you'd get something completely different! If you're reading this and write your own blog, why don't you share your own #15randomthings? </div>
isabel jordanhttp://www.blogger.com/profile/01087403575321827122noreply@blogger.com6tag:blogger.com,1999:blog-671730244319076817.post-84586082221592704532015-07-18T18:59:00.001-07:002015-07-29T12:48:03.109-07:00Patient Centred Care - Like a lot of things, I’m not sure what it is, but I sure know what it is when I see it. <style>
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<br />
I always like to tell a funny story…. For many years my son
talked about one of his favourite doctors. He’s been his favourite health care
provider because whenever we went there, the appointments were (in my son’s
perspective), mercifully short. For a young boy who spent a decent amount of
time at the clinic and the hospital, listening to adults ask questions and
receive information, these appointments with no preamble, little information,
and mostly self congratulation, were bliss.<br />
<br />
<div class="MsoNormal">
However, from a patient centred care approach, I’m not sure
I agreed. To be fair, technically, I had no fault with this doctor. His skills were, for good reason, legendary. My son was in excellent hands. But, when it
came to those small touches that makes the family feel like they are, at that
moment, the centre of the health care practitioner’s world? Well, not so much. The appointments, however, were definitely brief.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We recently had a new health care clinic added to our roster
and our initial appointment was scheduled to last two hours – the 13 year old
approached it with dread! His tolerance for medical appointments has gotten
better with age but surely not that much? </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This appointment was a completely different animal from
anything we’d ever experienced. This was more than #HelloMyNameIs! This was
#HelloWhoAreYouAndWhatDoYouNeed? From the get-go, the questions were about what
were our goals for his care. And let me be clear – not just my goals, his mom,
but his goals, the patient. The entire appointment was about our partnership as
a team. How we could move together and facilitate a working relationship in
order to effect better healthcare for my son. Wow. Let me say that again – Wow!
</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Living life with a rare disease, with an undiagnosed disease,
has been a life of my project managing a healthcare system that I’ve been working
on figuring out myself. I’ve sorted some stuff out. But I’ve missed a
lot. Some opportunities have passed me by. I think I’ve done a reasonable job, but, (and
this is a BIG but), I am only aware of the things I’ve missed because of other
parents. What else have I missed? And how has they impacted my son’s life?</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I can
not tell you how relieved, unburdened I am to have this new clinic talk to me
about a team approach.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Patient-centred care. I may not be able to explain it
succinctly, but can I ever tell you when I see it!<br />
<br />
<b>ADDENDUM</b><br />
A week after this appointment we went to another new specialist. Amazingly, another beautiful example of patient centred care. We see a lot of specialists, and for the most part I don't doubt their knowledge base, but we need so much more. We need partnership and lateral thinking.<br />
<br />
After the second great experience in seven days here's what I've distilled as [some of] my needs for patient centred care.<br />
<ol>
<li>Tell me who you are and describe you specialty.</li>
<li>Ask questions to listen and give me (and my child) time to speak. </li>
<li>Ask me what I need from our relationship & how we can build a plan together. </li>
<li>Tell me what you can give and what your limits are.</li>
<li>As a parent of a patient, don't just address me, address my child, your patient.</li>
<li>Tell me how we can communicate in the future. </li>
</ol>
I now realize that health care providers like this aren't the unicorns I thought they were. They need to be celebrated as the leaders they are.</div>
isabel jordanhttp://www.blogger.com/profile/01087403575321827122noreply@blogger.com2tag:blogger.com,1999:blog-671730244319076817.post-24594776169512699312015-04-11T07:54:00.000-07:002015-04-11T07:54:07.942-07:00On Gratitude..
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<br />
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I’ve been thinking a lot about gratitude and loss, loss and
gratitude. So much of my life is defined by the rare disease that has wound its
way into the every day conversation of our lives.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I wake in the morning and wonder if it will be a good day
for Z. If today will be a day that he’s well enough and gets some things done
on his tick list: things like seeing friends and going to school, riding his
bike and eating dinner with family. It seems like so little to ask of a day. Or
if today will be counting the moments for when he can balance the nausea
against his hunger. When we hope that the headaches don’t come. When he misses
his friends and we cancel our plans. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Whether things are going well or things are going poorly
there are always the conversations wondering if it was this variable or that
one that turned the tide. Could we repeat the pattern that worked? Is there a
pattern that made it worse? Do we have any control over any of it? It’s all
encompassing. It’s what I do. It has become who I am.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It is sometimes hard to feel gratitude in these times when I
want what everyone else has – the normal days with the normal milestones –
school, athletics, the everyday minutia of without the constant grind of
uncertainty.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I try to remember the days before, when I had other things
on my mind. Don’t get me wrong, of course I think of other things – friends,
family, what’s for dinner, what’s going on at work – although now work is rare
disease related as well. But the undercurrent is always the same. I have a
background hum that sometimes is a shriek that can never go quiet; that is
always there. And oddly enough, in that background hum, amazingly, I can find
my gratitude.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Ridiculous. I know.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’m looking at my kids right now as I write this. And I know
that despite what this disease has given us, our family has received gifts from
it. I don’t know what we’d be without it – I’ll never know that – but I do know
that my kids value each other in a way that is different than would otherwise
be. They bicker; they get on each other’s nerves – who doesn’t? But they see
each other in a special light because of the stress that rare disease has
imposed on our life. They are a unit in a way that typical siblings just
aren’t. I see them out there, brother and sister, taking on the world. I know
they have each other’s back. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Our little nuclear family has seen hard times and sometimes
I honestly feel like the stuffing is knocked out of me. But my kids and my
husband and my ridiculously cute and stupid dog remind me that laughter is the
cornerstone of resilience and hope. And we’ve gotten through all of it so far;
so likely we’ll get through the next bit too. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’m stronger than I would have been because of this and I
guess that’s a gift. It’s a gift I’d prefer not to get on my kids’ backs, but
as long as they’re getting that same gift of resilience, I’ll take it as well.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Do I wish things were easier? Of course I do. Does my family
spend a lot of time laughing in the despite the adversity? Often. Do I need to
keep learning that lesson? Apparently. Gratitude and loss. This isn’t the life
I imagined, but it is a beautiful one. I am so grateful for the beauty my
family shows me. For the laughter they give me. The joy we have is so heightened
sometimes I feel like I just almost can’t stand it.</div>
isabel jordanhttp://www.blogger.com/profile/01087403575321827122noreply@blogger.com0