Saturday, 13 April 2019

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 fa├žade 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.

Monday, 18 February 2019

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. 

Tuesday, 8 January 2019

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...

Thursday, 3 January 2019

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

Can you see me?