What's in a name?

"What's in a name? That which we call a rose by any other name would smell as sweet"
    William Shakespeare
    Romeo and Juliet, Act II, Scene ii

There has been much discussion in and around patient-oriented research about what to call people like me. By people like me, I mean patients, families, and caregivers who contribute our expertise to research endeavours. Debate can get heated, with the primary two terms (at least in Canada), Patient Partner and PWLE (Person With Lived Experience) being the primary contenders. 

What's my skin in the game? I've been in and around the research world for the past 17 years- first as a parent of a kid who has a rare disease, now, as a parent of 2 young adults with a variety of health problems and disability, as well as being a disabled person as well. I've been a part of, witnessed, and heard about patient partner experiences in that time that range from traumatizing and inequitable to respectful and deeply satisfying. Happily, the trend as been towards the latter instead of the former.

In more recent years, I've had the privilege in having roles advance what patient partnership can look like – letting the good and bad experiences that I, and others, have had shape partnership opportunities for others. Language and terminology are deeply important to me and I mull over how language can create clarity and lift our role in research teams. 

I believe that language both reflects culture and influences it. In recent years, I have shifted my language to ‘patient partner/partnership’ over other terms for a variety of reasons. I think the term 'patient partner' compels readers and research teams to look at those of us whose expertise has been obtained outside of academia through our navigation of health and social systems. It’s a subtle shift, but an important one that works to place patient partnership expertise as different than, but equal too, that of the academics and clinicians we work with. This has been and continues to be an uphill battle, but a vital one.

‘Patient partner’ does more than emphasize the ‘partner’ part of the term. Research and healthcare are highly hierarchal systems where the non-academic (the patient) are the people with the least amount of privilege and power. We feel that lack of privilege deeply – even more so when intersectional identities further the gap. The following three example teams show how alternative language use could be perceived and used.

Team 1

Dr. X is the senior researcher
Dr. Y is project lead
Drs. A & B are clinician researchers 
Mary Sunshine is engaged as the PWLE (Person With Lived Experience)

In team 1, Mary sunshine has no ‘job’ (ie researcher, clinician) and is therefore relegated to a be very junior member of the team. In addition, her role will be usually referred to that of a ‘PWLE’ – a term that has no meaning outside of this role. By that I mean that if a non-academic observer would have no real idea what a PWLE was and the importance of that role.

Team 2

Dr. X is the senior researcher
Dr. Y is project lead
Drs. A & B are clinician researchers

Mary Sunshine is the patient partner 

In team 2, while X, Y, A, and B are clearly people with status, as indicated by the title ‘Dr.’, Mary Sunshine has no such title and can be perceived as someone with less authority. However, the term ‘partner’ suggests a relationship that can approach the same authority as the other team members.

Team 3

Dr. X is the senior PWAE (Person With Academic Experience)

Dr. Y is the PWAE (Person With Academic Experience) project lead

Drs. A & B are PWCE (Person With Clinical Experience) 

Team 3 may be my favourite because it addresses the some of the inconsistencies in language, approach, and role. The language in Team 3 shows that if we were to be actually equitable in our language then the ‘Person With’ must be carried throughout the team members, where Drs. X, Y, A, and B are defined in the same manner as the ‘PWLE’.Physicians’ Perceptions Of People With Disability And Their Health CareMary Sunshine is engaged as the PWLE (Person With Lived Experience).

It is understandable to me that some patient partners have migrated to the term PWLE. By doing so, it erases the fact that we get our expertise from our navigation of the healthcare and social care systems. It erases the patient. Why is that important? The simple reason is that ‘patient’ is a stigmatized term, emphasizing the hierarchies that keep us at the bottom.

(For more on stigma in healthcare, see the links at the end of this post)

Of course folks want to walk away from that stigma. However, taking a page from disability studies, we know that stigma is only reinforced through euphemism. It is better to uplift the term ‘patient’ through partnership language than to obfuscate our role. Pushing back and owning the *importance* of our roles on teams is the only way to battle that stigma.

I often hear the patient partners ‘are more than 'just' patients. Putting aside the fact that the use of the word 'just' plainly shows how little respect patient expertise is given. Presumably it is needless to say that we are more than patients. However, it is patient/caregiver experience that is relevant to the work – not if we have a degree, a special job, or show prize poodles in our spare time. This goes for researchers as well – their role is to be the academics on the team. Their photography hobby or side-gig aren’t relevant to the research project.

I would never tell another patient partner how to define themselves, however, I think that it is important when we use language about patient-oriented research, we consider the impact of the words we use. Do those words push boundaries and elevate the role of the patient partner to that of an equal, or do they just entrench stigmas and attitudes that are not helpful? Each patient partner should have the freedom to identify with whatever label feels most appropriate to them. Bu I would encourage those who are writing in this space, as well as those creating partnership opportunities, to think about language and its ability to signal a real intent to partner.

Stigma in health facilities: why it matters and how we can change it

Disability Barriers to Inclusion

Physicians’ Perceptions Of People With Disability And Their Health Care

Well, it's been a minute...

Slowly Growing in the Shadows

Well, it's been a minute since I last wrote here. Pandemic life, chronic illness life, caregiving life have simultaneously had me frozen. It's amazingly difficult to write about anything when life and health feel so precarious. For those who know me, you know I've still been working, still been mentoring, publishing, and doing my best to keep up. But capacity for this kind of writing? Well, like I said, it's been a minute since I've been able to start *and finish* a post...

So this is my public notice to you (but mostly to me) that I'm going to carve out some time and write about some of the things that have been swirling in my head from patient partnership in general, to ableism, what EDI should actually mean, and whatever else bubbles to the surface. I'm really hoping you'll come back and have a conversation with me.

See you soon,

Isabel.

The hard decisions are often the right ones

 

 I'm going to start this with some facts:

• The COVID-19 pandemic is not over
• Everyone is at risk, but especially those of us with chronic illness, disability, and pre-existing conditions
• 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.

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.

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.

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.

22 April 2022

 

To the QF22 Steering Committee Members, and to the BSPSQC staff,

 

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. 

 

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.

 

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.  Other medical conferences have made the decision to enforce masking, but here the decision here has gone the opposite way.

 

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.  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.

 

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.  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.

 

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.

 

I think about my dad’s words a lot. I try not to run away from the hard decisions.

 

Wishing you all the best in your future endeavours,

 

Isabel Jordan.

Rare Disease Day 2021 - Reflections on a year like no other

Early this year I was asked by Dr. Christopher McMaster, Scientific Director of the Canadian Institutes for Health Research Institute of Genetics (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 here, 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 here.

There’s a special poignancy to Rare Disease Day this year. 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.

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.

 

The nature of rare disease means that many of us have always lived with uncertainty. 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.

 

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?

 

I, like many in our community, look to research as a potential means of improving our lives. 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.

 

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.

Out, damned spot! Out, I say! or trying to wash away the fear

It’s hard to know just what others may be going through at any time. That’s never been more true than now.

Image caption: white porcelain sink with soap suds at bottom. Soap dispenser on right. Cup on left

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.

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.

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.

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.

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.

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.

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?

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.

Can you see me?

Photo by Sue Robins

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.

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.

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.

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?

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. Those burdens were at least taken off my shoulders. Yes, we still had the uncertainty of rare disease, but we had less uncertainty of care.

It has been a sweet, sweet relief.

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.

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.

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.

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 see 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.

Thank you Dr. Tammie Dewan for being both a doctor and a healer.

On the nature of expertise

Photo montage of an IV bag & pump, a home blood pressure monitor, & a medication blister pack

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.

Frankly, I’m confused. 


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.


In fact, if you look at the Merriam-Webster dictionary, ‘expert’ 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.

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.

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.
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.

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. 

Curiosity and Patient Partnership... is that the magic combination?

Snowy mountains in distance framed by bare trees, blue sky behind

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.

Perhaps this is why my experience as a patient partner as a co-chair for the Society for Medical Decision Making Annual North American Meeting 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.

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.

Well, when it came with working with my amazing co-chairs, Dr. Holly Witteman (who initially approached me), Dr. William Dale (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 SMDM 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.

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 SMDM18 #PatientsIncluded, 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 patient engagement. It was about the system (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.

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.

• Recognize implicit power dynamics 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.
• Make sure you are partnering with more than one patient. Our views are diverse and the more of us you partner with, the more interesting and valuable the partnership opportunities.
• Understand that our lives, are by their very nature erratic 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.
• Understand that you are not doing us a favour by engaging. A truly collegial atmosphere makes us understand that you truly value us as partners. 
• Pay us for our labour, our time, our contributions. 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 this paper out if you'd like to learn more about patient compensation in healthcare research (full disclosure, I am one of the co-authors).

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...

I'm 49. And pretty damned happy about it

So 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.

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.

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.

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.

As far as I'm concerned, aging is a badge of courage.

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.

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.

not my cake - this was my son's ocean themed cake from last year

Hero

Today 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.

Hero:

noun, plural he·roes; for 5 also he·ros.

1.   A person noted for courageous acts or nobility of character: He became a local hero when he saved the drowning child.

2.   A person who, in the opinion of others, has special achievements, 

abilities, or personal qualities and is regarded as a role model or ideal: My older sister is my hero. Entrepreneurs are our modern heroes.

3.   The principal male character in a story, play, film, etc.

(https://www.dictionary.com/browse/hero)

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?           

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.

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.

The other day I saw a hero, the other day, you probably saw one too. They are everywhere and always there, for you. 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.

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.

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.

Heroes can be anyone, really. They could be me, or you! So next time you walk around, look for the capes, and they will be there. So next time you look into a mirror, you’ll notice a cape flowing there too.

Paying the Piper (or the cost of remembering)

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.

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.

And I feel it all again.

Does the audience know this?

Do the organizers?

Do I when I say ‘yes’?

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:

Do they know the cost? Will I ever stop paying?

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.

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.

Ok, back to PowerPoint.

Patient Engagement: You’re Doing it Wrong

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.

So let me share with you my story of Patient Engagement: You’re Doing it Wrong. 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.

So, on to the story. Are you buckled in?

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!!!

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.

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.

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 still 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.

I was done. I moved on. Because I am fortunate to work with some other fantastic groups that understand patient partnership.

Or so I thought.

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 only 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?

So of course I asked. And again I didn’t get any answers. I got an email full of platitudes and nothing else.

So what’s the object lesson here for people ‘engaging’ with patients?

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.

What’s the object lesson for me?

My initial instincts were right. I shouldn’t have engaged with this group. 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.

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.

Harm was done.

Open Access Science for Quality of Life and Partnership in Care

It's been a while since I've posted - too busy, too preoccupied, too everything. Happily, Jon Tennant (@Protohedgehog) alerted me to a neat contest the Open Access science people were having as part of OpenCon2017. 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! 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! 

(BTW, want to see more reasons #OpenAccess is important to people? Of course you do.. check out the other entries at https://www.authorea.com/inst/14826).

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.

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.

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.

This is how things stand now. My life is a beach, a rocky beach.

My life is a rocky beach

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.

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.

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 always 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.

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. @jackhourigan tweeted from @raeofsunshine79’s talk: “A worried mother does better research than the FBI.

A worried mother does better research than the FBI

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.