heart-shaped tree trunk
I remember the day vividly. Settled around a sleek boardroom table at a trendy downtown advertising agency, I was there as a patient representative. The agency, hired by our provincial Ministry of Health, had developed a new patient website and needed feedback from someone who would actually use it – a patient seeking health information online. My role, as part of the Patient Voices Network, was to navigate the site based on search prompts provided by the agency’s young, hip team.
Clicking on the “Search Health Topics” tab, a drop-down menu appeared, listing numerous diagnoses. But something glaring was missing: “heart disease.” The number one killer was absent, yet “hemorrhoids” made the cut. A health website for patients that overlooks heart disease? It was a significant oversight.
I pointed out this critical flaw, met with puzzled looks from the hipsters. For the next ninety minutes, I diligently identified other gaps and navigational problems. After the session, the agency team thanked me, and one of them discreetly slipped a small envelope into my hand.
Inside? A $5 Tim Hortons gift card.
Five dollars… the balance of a small coffee and a donut.
This seemingly insignificant gesture sparked a profound realization.
Personally, I felt that receiving nothing would have been preferable to this paltry $5 gift card in exchange for over ninety minutes of my time – time I could never recoup. Initially, I couldn’t quite pinpoint why this small gift card bothered me so much. Perhaps it was the stark contrast between the sophisticated setting of the ad agency, the youthful exuberance of the team, and my presence there, seemingly just to tick a “Patients Included” box.
However, the core issue was likely deeper. This well-compensated, for-profit agency had secured a government contract – funded by my tax dollars. My contribution felt less about genuinely assisting the government or future patients and more about rescuing these “hipster” professionals from potential embarrassment before they presented a flawed website to their client.
The $5 Tim Hortons gift card felt like a clear message: ninety-plus minutes of a patient’s life, my life, was valued at a mere five dollars. It felt insulting. Checking the Tim Hortons gift card balance suddenly became a metaphor for the value they placed on my input.
In my previous 35-year career in public relations, spanning corporate, government, and non-profit sectors, we wouldn’t even consider changing signage colors without extensive focus groups to understand user preferences. And our focus group participants? They received dinner and a $100 honorarium for their time. Why hadn’t this agency, awarded a substantial government contract, prioritized engaging with real patients from the outset, instead of waiting until the eleventh hour to bring in a patient for a last-minute review?
I had essentially saved these professionals from a significant misstep, all for the bargain-basement price of a Tim Hortons gift card balance.
This experience brings me to the crux of this discussion: the crucial issue of patient compensation.
A groundbreaking article recently published in the Patient Experience Journal, an international, peer-reviewed, open-access publication, sheds light on this very topic. Titled “Patient partner compensation in research and health care: the patient perspective on why and how,” the paper is authored by patient advocates Dawn Richards, Isabel Jordan, Kimberly Strain, and Zal Press.
One of the most revealing aspects of this publication is the recognition that patient collaborator compensation is not a novel idea. In fact, established payment guidelines already exist for those who involve patients in collaborative work. Researchers have cited examples such as:
“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.”
I have previously addressed the sensitive subject of compensating patients and caregivers for their participation in projects, conferences, and medical research collaborations (here and here, for instance).
A particularly insightful perspective comes from chronic illness activist Carly Medosch, whom I met at Stanford University’s Medicine X conference in 2012, where we were both ‘ePatient Scholars’. Carly eloquently articulated her views on healthcare professionals who expect patients to contribute their time and expertise without compensation:
“ 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 important to note that healthcare professionals, academics, and government officials who participate alongside patients in meetings and conferences are often not directly paid for their attendance. However, their participation is typically part of their salaried job responsibilities. They may also receive benefits like travel, accommodation in comfortable hotels, and per diem expenses. For self-employed consultants, these activities are not only billable but also tax-deductible.
Patient collaborators, conversely, often use unpaid time off or vacation days to participate as volunteers. We not only go uncompensated but also incur personal costs for the “privilege” of volunteering. Adding insult to injury, patient contributors often find their names and affiliations omitted from conference programs, unlike other speakers.
Let me be clear: as a blogger, speaker, and author, I have willingly and freely volunteered a significant amount of my time to advocate for patients. Raising awareness about women’s heart disease is a cause deeply personal to me. Since completing my WomenHeart Science & Leadership patient advocacy training at Mayo Clinic in 2008, I have dedicated countless volunteer hours to this cause. Despite the limitations imposed by ongoing cardiac symptoms of coronary microvascular disease, I have consistently accepted invitations whenever my health permitted.
The first medical conference organizer who offered to pay for my presentation broached the topic of speaker compensation upfront, asking if their standard speaker fee was acceptable. That fee significantly exceeded the value of my Tim Hortons gift card balance by $345.
The reality is that organizations, academic institutions, and conference organizers invite patients because they recognize the inherent value of lived patient/caregiver experience in enhancing their events and projects.
However, there’s a reluctance to proactively discuss fair compensation. The concept of patient inclusion is often embraced, but not the associated cost of compensating them fairly. At a workshop hosted by our local Patient Voices Network, the (paid) facilitators suggested that “some” patient volunteers might be “insulted” by the offer of payment. One of my Patient Voices colleagues aptly retorted, “Please! Go ahead and insult me!”
If you represent an organization that engages patients, please reconsider the practice of token gestures like a Tim Hortons gift card balance. Instead, acknowledge the value-added benefit that a patient voice brings to your event, project, meeting, or research initiative. If you genuinely believe in the importance of patient inclusion for improved outcomes, incorporate a reasonable compensation budget into your early planning stages. This demonstrates respect and fosters a fair partnership.
And then, be prepared to support that partnership accordingly. It’s about valuing expertise beyond a Tim Hortons gift card balance.
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Q: Can academics, physicians and government regulators be convinced to compensate patient collaborators?
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NOTE FROM CAROLYN: Explore more about patient advocacy and related topics in my book, “A Woman’s Guide to Living with Heart Disease”. Available at local bookshops and online retailers like Amazon or directly from 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, by Erin Moore
“We are all patients.” No, you’re not.
First we had peer review – and now patient review
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Published by Carolyn Thomas
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