Navigating the sleek, modern boardroom of a downtown advertising agency, I found myself facing an array of bright-eyed, young professionals. My mission? To assess a new patient website, a project commissioned by our provincial Ministry of Health, through the eyes of a patient seeking online health information. As a member of the Patient Voices Network, I was there to provide crucial feedback, to ensure the site was user-friendly and informative. The agency wanted to know: would a typical patient easily find answers to common health questions on this platform?
Clicking the “Search Health Topics” tab, a dropdown menu appeared, listing numerous diagnoses. Yet, conspicuously absent from this list was “heart disease”, a glaring omission considering it’s a leading cause of health concerns. However, “hemorrhoids” made the cut. How could a health website designed for patients overlook the number one killer?
I pointed out this critical flaw, met with puzzled looks from the agency team. For the next ninety minutes, I diligently navigated the site, highlighting further gaps and navigational hurdles. My task complete, I was thanked by the agency staff. As I left, one of them discreetly pressed a small envelope into my hand.
Inside, nestled within the envelope, was a $5 Tim Hortons Gift Card.
Symbolic heart carved into a tree trunk, representing the heartfelt message about Tim Hortons gift card compensation in patient advocacy.
Five dollars. For over ninety minutes of my time and expertise.
The offering of this small Tim Hortons gift card sparked a significant internal debate. Frankly, I would have preferred no compensation at all than this token gesture. The $5 gift card felt jarring, a stark disconnect between the sophisticated setting of the ad agency, the youthful hipsters who populated it, and the very reason I was there – to genuinely improve a health resource, not just tick a ‘Patients Included’ box.
Perhaps what truly bothered me was the realization that this high-powered, for-profit agency had secured a public sector contract – funded by my tax dollars. It felt less like I was assisting my government or future patients, and more like I was bailing out these agency professionals, preventing them from delivering a flawed website to their client.
The Tim Hortons gift card seemed to suggest that my ninety-plus minutes, the insights of a patient with lived experience, were valued at a mere five dollars.
Reflecting on my extensive 35-year career in public relations, spanning corporate, governmental, and non-profit sectors, I recalled instances where even minor decisions, like changing signage colors, involved extensive focus groups to ensure user-friendliness. And those participants? They received a full dinner and a $100 honorarium for their time. Why then, hadn’t this agency, entrusted with a crucial government project, prioritized engaging with real patients from the outset, instead of waiting until the eleventh hour? Why the afterthought of a patient consultation, capped with a Tim Hortons gift card?
I had, in essence, rescued this firm from potential embarrassment, all for the price of a small coffee and pastry at Tim Hortons.
This experience underscores a critical issue recently highlighted in the Patient Experience journal. A groundbreaking paper titled “Patient partner compensation in research and health care: the patient perspective on why and how,” penned by patient advocates Dawn Richards, Isabel Jordan, Kimberly Strain, and Zal Press, delves into the crucial topic of patient compensation.
The research reveals that the discussion around compensating patient collaborators is not new. In fact, established payment recommendations already exist, cited by researchers, offering guidelines for those who engage patient partners:
“Some examples include: hourly ($25), half day ($100, up to 4 hours), and full day ($200 – up to 8 hours); partner in a specific research project ($500-800 per year), member of a committee with a network-wide mandate that includes more meetings/commitment than a research project ($1,000-1,200 per year); member of a network steering or executive committee ($1,500 per year); a daily committee fee of $250 or a daily research work fee of $250; minimum wage as an hourly rate$50 per meeting once a month (personal experience); and, $2,000 per year for a 2-3 year project to participate in monthly meetings, to provide project input frequently, and to review work plans, papers, etc.
“Having a budget for the efforts related to patient partners/collaborators and their engagement is a must. . . Some patient partners/collaborators are simply happy to be part of the experience and will not ask for much or for anything at all. Others may have professional experience in the field, and consequently, may have a usual hourly rate that may be outside of your budget.”
This issue of compensating patients and caregivers for their valuable input is one I’ve addressed before, as highlighted in my previous articles here and here.
Chronic illness activist Carly Medosch, whom I met at Stanford University’s Medicine X conference, eloquently captured the sentiment surrounding unpaid patient work. As an ‘ePatient Scholar’ at the 2012 event, Carly shared her candid perspective on healthcare organizations expecting free labor from patients:
“I did not choose to volunteer for fame and profit. I made the decision once I was healthy enough to have energy to spare. Above all, I wanted to help educate fellow patients and help fill the huge gap in education and information in my town.
“My major beef is with organizations that use emotions and cultural expectations to extort free work from patients and their loved ones. You wouldn’t ask a plumber to work for free, but many people think it is okay to ask patients to work for free. And patients do work for free because our causes are so personally important to us, and are sometimes even matters of life or death.
“I believe that some organizations know they can get away with it, so they do.
“Organizations can even play on emotions to devalue the work of patients. Organizations often send the message (intentionally or passively) that the reward is the warm fuzzy feeling of helping others, or possibly even helping yourself by funding research that could cure your disease.
“If your organization is not also using these same manipulative tactics on doctors and professional consultants, then you are discriminating against patients.
“The more patients are willing or emotionally coerced into performing professional work without compensation, the more organizations will come to expect free work in the future.”
It’s essential to understand the disparity in compensation. While healthcare professionals and academics attending the same events or meetings as patient advocates may not always receive direct payment for attendance, their participation is inherently tied to their salaried positions. They are often provided with travel, accommodation, and per diem expenses, all while continuing to earn their regular salaries. Self-employed consultants, in addition to potentially earning substantial fees, can also deduct expenses related to these engagements as business costs.
Patient collaborators, conversely, often contribute their time on top of managing their health conditions, frequently taking unpaid leave or using vacation days to participate. Beyond the lack of compensation, patient contributions are sometimes further diminished when their names and affiliations are omitted from event programs, unlike other speakers.
It’s important to clarify that my extensive work as a blogger, speaker, and author has largely been voluntary, driven by a deep commitment to raising awareness about women’s heart disease.
Since completing my WomenHeart Science & Leadership patient advocacy training at Mayo Clinic in 2008, I have dedicated countless volunteer hours to this cause. Despite managing ongoing cardiac symptoms of coronary microvascular disease, I have consistently accepted invitations to contribute whenever health permits.
The contrast is stark when recalling the first medical conference organizer who proactively addressed speaker compensation during our initial discussion. They openly discussed their speaker budget and inquired if their standard speaker fee was acceptable – a fee significantly exceeding a Tim Hortons gift card by $345.
Organizations invite patients to share their lived experiences because they recognize the inherent value patient voices bring to projects and events. Patient perspectives enhance outcomes and provide invaluable insights.
However, the reluctance to openly discuss fair compensation suggests an underlying issue. The concept of patient inclusion is often embraced, but the willingness to fairly compensate patients for their expertise is not always present. At a workshop hosted by our local Patient Voices Network, even the (paid) facilitators suggested that “some” patient volunteers might be “insulted” by offers of payment. A fellow Patient Voices member aptly retorted, “Please! Go ahead and insult me!”
To organizations seeking patient partnership: put aside the token Tim Hortons gift cards. Recognize the substantial value patient voices bring to your initiatives. If you genuinely believe in the power of patient inclusion to improve outcomes, then integrate a reasonable compensation budget into your planning from the outset. Foster a respectful and equitable partnership that truly values patient contributions.
And most importantly, be prepared to support that partnership appropriately.
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Q: Can academics, physicians and government regulators be convinced to compensate patient collaborators beyond a Tim Hortons gift card?
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NOTE FROM CAROLYN: For more insights on patient advocacy and related topics, explore my book, “A Woman’s Guide to Living with Heart Disease”. Support independent booksellers by requesting it at your local bookshop or order online (paperback, hardcover, or e-book) from Amazon or Johns Hopkins University Press (use code HTWN for a 30% discount).
Further Reading:
My open letter to “Patients Included” conferences
Patient bloggers at healthcare conferences: ‘real’ journalists?
Which patients does the “patient voice” represent?
Why patient stories actually matter
Patients included. But are we respected? – from the 66 Roses blog, written by Erin Moore
“We are all patients.” No, you’re not.
First we had peer review – and now patient review
