Patients can sometimes be sickly people in bed, wearing embarrassingly undignified bum-baring hospital gowns.
Patients can also be experts in the lived experience of their own diagnoses, who contribute to medical research and education teams as partners in meaningful academic projects.
If you’re surprised by that last description, you’ll be even more surprised by all the things that many patient partners can do in life (besides laying around being sickly). . .
Toronto’s Dr. Dawn Richards is a unique example – because she’s also a patient who has lived with a chronic incurable condition for years. In her latest paper, published with her colleagues in The Lancet journal, EBioMedicine, she once again endorsed the inclusion of patient partners on medical research teams – because, as the paper concluded, patients are the actual end users of medical research. Patient partners, she says, improve researcher understanding of the real life priorities and impact of their work.
We’re not talking about patients as research participants – the ones who volunteer to be part of studies run by research teams. Dr. Richards explains how to do this right:
“Two patient partners on our research team – including me! – were recruited through our involvement in past projects and personal referrals. We were involved in the initial research project grant applications as co-applicants, helped co-develop the research question, participated in bi-monthly meetings, provided input on data, and helped synthesize the results of this study. Both of us are listed as co-authors.”
On Twitter this week, Dr. Richards added:
“I’m fascinated by the walls and barriers we create for patients in research who happen to be people with all kinds of skills. I find it interesting how little we sometimes value patient partners and their contributions, skills and perspectives. When you’re a ‘patient’ and people can’t see you as a full person, it’s tiring to fight for the smallest bit of respect that others on the team might take for granted, or get without needing to ask.”
Lelainia Lloyd* is a Vancouver patient living with a number of painful chronic conditions. She’s also an artist and an active patient partner involved in a number of advocacy and education projects. (Her excellent paper called A Tale of Two MRIs, for example, published in the Journal of Medical Imaging & Radiation Sciences, was named one of the Editors’ Choice Top 5 Paper award winners in 2020).
I liked the way Lelainia responded to Dr. Richards’ tweet with her own:
“This is why when I’m sharing my experience, I finish with slides of my art, my family and my accomplishments.* I want anyone viewing or listening to know that I’m a person with a full, rich life just like anyone else. I also happen to live with a rare disease and disability.”
Some healthcare professionals (like Dr. Marc Pierson, for instance) may be surprised to learn that a patient can have a “full, rich life”. I mention this only because of his odd opinion about patients quoted in the Center for Advancing Health report called “Here To Stay: What Healthcare Leaders Say About Patient Engagement“:
“Few or no people I have met define or refer to themselves as patients. They understand that a patient is less than a whole person, is less than what they are. I would prefer thinking of ‘people’ engaged in their health and health care.”
As I wrote in response to Dr. Pierson’s quote at the time, I’d bet my next squirt of nitro spray that many patients would find his condescending description of us (“less than a whole person, less than what they are”) as clueless as I did. The reality is that I AM a heart patient living with ongoing symptoms, but I’m many other things as well. I’m a reader, a writer, a bread baker, a theatre volunteer (since 1986!), a walker, a gardener, a public speaker, a Mum, an aunt, a sister, a friend, and a crazy-in-love Baba to two darling grandkids. I may be different than how I used to be, pre-cardiac diagnoses, but last time I checked, I was still indeed a “whole person”.
Lelainia Lloyd is on the right track. Until academics can genuinely view each patient as capable of “a full, rich life” who happens to live with a certain diagnosis or two, they will continue to see patients as lesser-than versions of professionals – yet handy to have on hand to improve their classes, research and events (and allow them to check off that all-important #PatientsIncluded tickbox).
I was recently invited to participate as a patient partner on an event planning committee. The organization’s focus on women’s heart disease was right up my alley. But I was barely through filling out the standard name/address/title fields of the official application form when, out of the blue, the next question asked for the name and contact info of my administrative assistant. I did not see that one coming.
Because I happen to live a full, rich life, I figured out right away what was going on. Here’s a news flash, dear academics and bureaucrats: most patients you will approach for their unpaid input do not have an admin assistant. That generic form you send to patients is designed for academic professionals, certainly not for people like me. If your team claims that “Patients Are Important To Us” but won’t alter even a simple form for the patient partners you’re recruiting, you’re telling us that patients are an afterthought.
When I was invited to be a panelist at a medical conference on women’s heart disease at Mayo Clinic in 2015, I was surprised to see in the conference program that the three cardiologists on our panel were each identified by name and a brief bio, but I was simply identified in the program as a nameless “Patient Representative”. Seriously.
Here’s another small example: before I signed my book contract with Johns Hopkins University Press to write “A Woman’s Guide to Living with Heart Disease” , I was asked to complete their standard Author Questionnaire, which asked questions like:
Is the manuscript based on your doctoral dissertation?
What are your current research interests?
What professional meetings do you attend?
I thought those questions were pretty funny. But an academic publisher is, after all, focused on university scholars and scientists. I can’t be sure, of course, but I might have been the first ever JHU Press author who did not have a PhD, an MD or any another advanced degree. I was just a heart patient who’d been contacted by their Executive Editor one fine day and asked if I might be interested in writing a book based on my Heart Sisters blog articles. Dealing with regular people who write books for other regular people might be new territory for a prestigious academic press.
But that wasn’t the end of it. The questionnaire further requested a copy of my most recently updated curriculum vitae, or CV – basically, a detailed summary of my education, qualifications and career experience – typically used in employment applications.
But I wasn’t applying for a job at JHU Press. I was about to start writing a book that THEY had asked me to write.
My 35+ year public relations career in corporate, government and non-profit sectors (and my two other published books) had nothing at all to do with my qualifications to write a book for women with heart disease. In fact, the only things that actually qualified me to write this book were these:
- I’d survived a misdiagnosed heart attack
- Five months later, I’d attended the 2008 WomenHeart Science & Leadership patient advocacy training at Mayo Clinic
- Since 2009, I’d written hundred of Heart Sisters blog articles about women’s heart disease (attracting millions of views from 190 countries)
- I had spoken to thousands of women (and a few men!) at my sold-out standing-room-only Heart-Smart Women presentations (described by one reviewer as “Part cardiology bootcamp, part stand-up comedy”!)
I tried to explain all of this to the Executive Editor at JHU Press. The response: her Editorial Advisory committee really needed to see my list of education credentials before our project could proceed to a final review by the Faculty Board.
Why not, I asked her, just tell them this about those credentials?
“Carolyn Thomas was an art college drop-out during the 1960s, who returned to university in her 40s as a single parent, completing nine years of night school at the University of Victoria’s School of Business & Management, where she was awarded a plaque for having the highest mark in her first year Marketing class.”
I’m pretty proud of that plaque, but the exasperated Executive Editor did not appreciate my suggestion. This is simply not how things are done in academia.
In the end, she finally insisted that I had to submit SOMETHING that would keep the committee happy.
All of this tends to support my long held theory which is this: once you’re an academic, working in an academic setting, with lots of other academics around you, it’s tempting to forget that there just might be far more important qualifications in life than a long list of advanced degrees.
And as Lelainia Lloyd explained in her final Twitter response to Dr. Richards’ tweet on the value of “contributions, skills and perspectives” of patient partners:
“Dare I say this? NO ONE is going to work harder than I am, or care more than I do when it comes to working to improve things for patients and my rare disease community. My sense of responsibility for my community is HUGE!”
* All images above courtesy of Lelainia Lloyd. These are some of the slides she shows at the end of her healthcare presentations, clockwise from top left:
- ♥ as a 2010 Paralympic torchbearer; a Queen Elizabeth II Diamond Jubilee medal recipient for her “lifetime of service to Canada” (she began volunteering when she was 5); a Rick Hansen 25th Anniversary Relay Difference Maker
- ♥ Lelainia’s family
- ♥ just a few of her art projects
Q: What important life moments would be on your slide show if you had to illustrate them to those who don’t know you?
♥ NOTE FROM CAROLYN: I wrote much more about that road from person-to-patient in my book “A Woman’s Guide to Living with Heart Disease“ (Johns Hopkins University Press) – a project that did get the blessings of that committee! You can ask for this book at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from Johns Hopkins University Press (use their code HTWN to save 20% off the list price when you order).