by Carolyn Thomas ♥ @HeartSisters
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.
Administrative assistant?
ADMINISTRATIVE ASSISTANT?!?
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
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).
See also:
-“We Are All patients.” No, You’re Not.
–My Open Letter to “Patients Included” Conferences
–Which Patients Does the “Patient Voice” Represent?
–‘Healthy Privilege’ – When You Just Can’t Imagine Being Sick
–Skin in the Game: Taking Women’s Cardiac Misdiagnosis Seriously
Heart Sisters 
Very useful and needed tips. Thank you for sharing this blog.
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Carolyn: An art school dropout from the sixties is a great qualification in my book…. Just being from the sixties gives you credibility….
Surprised you made it through the John Hopkins Hoops… Someone was paying attention…. And everyone who has had a heart attack should automatically qualify for an administrative assistant…
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I agree Dr. Steve – everyone who has had a heart attack should automatically qualify for an administrative assistant!
“Here’s your lifetime prescription for statins, here’s your own personal admin assistant…”
If only that could be part of the current cardiac guidelines. Just think – YOU would get a whole fleet of admin assistants! 🙂
Take care, stay safe up there in Alaska!
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Being part of the medical establishment didn’t help when I was told that I needed a quadruple bypass.
As an RN, with over 30 years experience, I was talked down to by the Cardiac surgeon and his fellows. And this was at Mayo Clinic. I was far from home and no family there. No doctors seemed to care about that lack of support. The only support that I had was from some of the nurses.
Though, one day, I had severe abdominal pain and told an RN, who never returned. I cried for hours, rang my call bell and no one came. Very disappointing. Two of my 4 bypasses collapsed within 4 months. Spoke with my cardiac surgeon, who said “Oh, you’ll be OK”. Being part of medicine myself, I was treated as I was not.
AND, in fact, NO patient should ever be treated this way! Also, they never even asked for my “administrative assistant”. It’s good they didn’t, or this red head would have laid them out!
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Good grief, Virginia! Having two of your four bypass grafts collapse within four months is NOT “okay” on any planet I’m aware of. And I’m dismayed that you were talked down to like this by Mayo staff.
I sometimes wonder if nurses, docs and other healthcare professionals sometimes aren’t recipients of this kind of dismissive treatment when they become patients far more often than we might imagine. I used to think nurses like you would get the ultra red carpet treatment as patients due to professional courtesy, but after hearing a number of disturbing stories like yours (and especially after reading Georgetown U. pediatrician Dr. Itzhak Brook‘s book “My Voice” about his own experience as a physician facing throat cancer and, ultimately, a laryngectomy), I just don’t know. For example, Dr. B. wrote how helpless he felt as a patient:
“On one occasion, I asked a senior resident to clean my obstructed tracheotomy tube. He reluctantly complied, but did it without using a sterile technique and flushed the tube using tap water. The tube he wanted to place back was still dirty, and when I asked him to clean it better, he abrasively responded: ‘We call the shots here!’ and left my room.”
Can you imagine? I’m guessing you can. You’re so right. NO patient should be treated this way.
I hope you’re doing better these days. Take care, stay safe. . . ♥
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Carolyn, as a fellow member of Mayo Symposium in 2008, I applaud your columns, your insight, and how you have shared your experiences in your journey.
This piece, as well, brings new advocacy and perspective about survivors’ contributions to learning about heart disease.
Thank you.
Lynn Kelly
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Hi Lynn – how lovely to hear from you – all the way from Sugarland, Texas!
Thanks so much for your kind words. As you know well, heart survivors can indeed contribute so much, especially when supporting what I like to call the “freshly-diagnosed”. My favourite response to anything I write or speak about these days is when a relieved woman says simply, “I thought I was the only one feeling this way. . .”
None of us are “the only ones”, as you and I both learned at Mayo . . Having the opportunity to train at Mayo Clinic all those years ago was an utterly unforgettable and life-changing experience for me. I arrived in Rochester as an overwhelmed heart attack survivor, but came home, as Dr. Sharonne Hayes described our grads – “gunning for bear!”
Take care, stay safe, and thank you again, Lynn. ♥
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In regard to how physicians view those whom they treat, I am curious about the criteria used to screen medical school applicants.
I realize that applicants need to have strong MCAT scores at least in the US, and that there are a variety of different educational requirements, etc. But many if not most medical schools require interviews and I’d be interested in understanding what traits the interviewers seek. Plus, during the medical school process, what sorts of traits are emphasized and encouraged?
I sometimes see and hear comments by physicians in non-medical settings that make me wonder about attitudes they hold toward patients. I’m personally very fortunate in that I have a choice of physicians and mine do listen to me and encourage my input and participation. But, I have left other physicians when they did not exhibit those qualities.
I’ve encountered physicians in many different non-medical settings and some are decidedly non-collaborative, whereas others seem to welcome input from people. I just wonder if some of this is influenced by the medical school screening process.
I also know people who aren’t interested whatsoever in participating in their own health. They want to go to the doctor, have him/her prescribe medication, and do nothing to learn about their own health and what they can do to influence a positive outcome.
I’d be interested in understanding how prevalent patient desire to be involved is in our culture. Do most patients want to be involved and take responsibility, or are those of us who do part of a minority?
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Such good questions, Helen! I suspect that med school criteria have changed a lot since the days when only the applicants in the top 97th percentile were considered top picks for medical school acceptance. Two years ago, for two Saturday mornings in a row, a group of my friends helped another young friend practice role-playing questions for her upcoming med school interviews (using a range of questions asked during the previous years’ interviews). They were really solid questions requiring critical thinking, life experience, moral suasion, empathy and listening skills. I was so impressed! (And after her real interviews, YES, she was accepted!)
The truism seems to be that everybody who applies is already a brainiac who will do well on the MCAT, but that alone is just not enough these days. Brainiacs do not make the best doctors. We also know from previous studies that around Year 3, something happens to med student’s ability to empathize with their patients – the phenomenon of “empathy erosion”.
I don’t know if this “empathy erosion” is a temporary phase, or the beginning of a permanent attitude among some experienced physicians. I too have met both kinds of physicians you describe.
And I think your description of what some patients do or don’t do is completely accurate. I wrote about this in “Your Health Care Decisions: Don’t Worry Your Pretty Little Head Over Them”.
One study that floored me at the time reported: “Only 10% of women surveyed knew their personal cardiac risk factors, versus 64% of women who know how much they weighed in high school…”
Take care, Helen – stay safe. . . ♥
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How I wish I could convince my cardiologist to treat me as a partner, not just as a patient. I wish he would share some of his knowledge, instead of my having to pry it out of journal research articles. It’s very frustrating, but being a heart patient who wants to be an active learner rather than just a passive patient is full of frustrating moments.
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Hello Sandra – thanks for raising such an important point. It’s so ironic that many physicians complain when their curious patients turn to Dr. Google for answers to their medical questions, while docs like yours deliberately ignore ‘active learner’ patients – which is exactly what forces patients to “pry it out of journal articles” themselves.
This is why I wish all physicians would hand out ‘prescriptions’ listing credible online resources for patients so that both parties would know that the information being learned comes from a trustworthy source.
Take care, stay safe out there. . . ♥
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I guess I should not completely write out that “LM*OROTF”, but that’s my comment!
Admin Assistant!?! I know I don’t have one ‘cos I still have a stack of Cardiology and Neuroscience and Pain Management articles not carefully sorted in boxes. Neither are my emails answered in a timely fashion or phone calls returned by my Admin Assistant.
I just happen to be living a full life while helping hundreds and backing up my statements with references from various professional journals and books. I fought to have Cardiac Vasospastic Angina recognized, fought to have CRPS recognized and currently am in a battle to have certain chronic pain recognized as needing a certain opioid.
For these aforementioned conditions, it takes a kind and caring physician who takes TIME to manage both the patient and their diagnosis even one by exclusion. I get it when the patient is seen as broken and taking too much time to fix beyond testing to eliminate the obvious, washing their hands from any effort to look further.
When I arm a patient with information to present to a physician, my expectation is that the patient isn’t dismissed as a Dr Google fanatic but as a patient desperate in most cases to find help.
That’s why I continue to collect information to share and continue to see new piles of forms awaiting my lazy Admin Assistant to file, answer emails, take calls etcetera etcetera etcetera.
People generally ask of me “How do you do it all?” I’ll likely be seen as Insistent, Persistent and Consistent, the title of an article I wrote years ago for Stanford Medical.
Well done Carolyn! Now, to get up off the floor.
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Hi Joan – I’m rolling on the floor myself, reading about that lazy good-for-nothing admin assistant of yours!
I think I have her sister working here as my own admin assistant. My desk is a mess, my to-do list is endless, I sometimes don’t get my phone messages checked for days. And where the heck is that assistant when I need her?!?
Thanks for reminding us (and our physicians) that when patients ask their doctors about information on their diagnoses that they’ve had to learn elsewhere, they’re not being “difficult” – they are far more often desperate to get help. Such an important point!
I think what you have been doing for years to help other patients with coronary microvascular dysfunction or Complex Regional Pain Syndrome is remarkable and valuable. (READERS: see more about Joan in this 5-minute video from Emory University with Dr. Habib Samady). https://www.youtube.com/watch?v=Dw51gZXwYOI
Joan, please get your admin assistant to send my admin assistant a link to that ‘Insistent, Persistent and Consistent’ Stanford article you wrote – I’d love to see that.
Thanks for a good laugh this morning. Take care, and stay safe. . . ♥
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