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?