I settled in at the impressive boardroom table of a chic downtown ad agency, where I’d been invited to review a new patient website that this agency had created for its client, our provincial Ministry of Health.
This agency wanted to know if an average patient like me seeking online health information would be able to easily navigate this website while looking for answers to some common questions. My volunteer assignment that morning was to noodle around the site in response to a dozen or so search prompts that the young agency hipsters seated around me would provide. When I hit the “Search Health Topics” tab, it revealed a pull-down menu with many diagnoses listed. But I noticed immediately that “heart disease” was oddly missing from the health topics pull-down. I did, for example, see that the diagnosis of “hemorrhoids” was up there. What kind of health website for patients forgets to list our #1 killer?
I pointed out this problem to the hipsters, who appeared to be puzzled. I then spent about 90 more minutes flagging several other gaps and navigation obstacles as I browsed the site. After we were done, I was thanked by the young hipsters, one of whom slipped a small envelope into my hand.
When I looked inside, I found a $5 Tim Hortons gift card.
Five dollars. . .
This transaction had a profound effect on me. Personally, I’d rather receive nothing instead of a $5 gift card in exchange for 90 minutes of my life (minutes which I’ll never get back). I wasn’t sure why that $5 gift card bothered me so much at the time. Perhaps it was the disconnect between where we were (chic ad agency) and who they were (young hipsters) and why on earth I was even there (the patients included tickbox needed to be checked off).
Most likely, however, what galled me most was the fact that this highly paid for-profit company had landed a government contract (read: my tax dollars at work), and I was not so much helping my government or even future patients as much as I was helping to save the sorry asses of the hipsters before they submitted their problem-riddled website project to their client.
Yet what they seemed to be telling me was that 90 minutes in the life of a lowly patient like me was worth an insulting five bucks max.
By comparison, during my 35+ year public relations career that included corporate, government and non-profit sectors, we would rarely have even changed signage colours without first focus-grouping the options to death to learn what worked best with our end users.
So why hadn’t the hipsters who’d landed this patient website contract long ago been talking (and more importantly, listening) to actual Real Live Patients from the get-go instead of waiting until the launch deadline to bring me in?
I had just rescued these professional people from considerable embarrassment and all, apparently, for the bargain basement price of five dollars.
Which brings me to the point of today’s essay.
A ground-breaking paper has recently been published in the journal, Patient Experience, an international, open-access, peer-reviewed journal. The paper is called: Patient partner compensation in research and health care: the patient perspective on why and how. The four patient authors are Dawn Richards, Isabel Jordan, Kimberly Strain, and Zal Press.
One of the most interesting parts of the Patient Experience publication was learning that patient/collaborator compensation has not only been widely discussed already, but there are existing payment recommendations listed for anybody who invites patient collaborators to work alongside them, cited by other researchers as follows:
“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.”
.I have written (here and here, for example) about the prickly issue of paying patients and caregivers who are asked to participate in projects, speak at conferences, and work as collaborators in medical research.
My favourite quote on this prickly issue comes from chronic illness activist Carly Medosch, whom I first encountered at Stanford University’s Medicine X conference, an event we both attended in 2012 as ‘ePatient Scholars’.
Carly wrote her own frank assessment of healthcare professionals who expect her and other invited patients to work for free:
“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.”
To be clear, the professional hospital, academic or government staff who appear onstage with me or show up at meetings with me are rarely if ever specifically paid for attending either. But even when they are not, they’re very likely to be flown in the night before, put up in a nice hotel, provided with a per diem expense account, almost always while earning their usual salary. Going to meetings, speaking at conferences, and participating on committees is what they get paid to do as part of their job descriptions.
If they’re self-employed, they will later be able to write off all costs associated with our activities as a tax-deductible expense.
But patient collaborators, on the other hand, will often take unpaid days off work or vacation time to volunteer to speak. Not only are they not being paid, but the opportunity to volunteer is costing them money. And then they are usually too polite to mention when their names and affiliations are not even acknowledged in the conference program, as all of the other speakers are.
Let me also clarify something important here: as a blogger, a public speaker and an author, the vast majority of my time has been offered freely and happily as a volunteer.
The cause of raising awareness of women’s heart disease is so important to me personally that, since graduating from my WomenHeart Science & Leadership patient advocacy training at Mayo Clinic in 2008, I have volunteered countless hours of my time to this cause. My time is carefully limited, due to ongoing cardiac symptoms of coronary microvascular disease, but as my health allows, I’ve been happy to say YES to almost all invitations whenever I could.
The first conference organizer to ever mention paying for my presentation at their event brought up their speakers’ budget out of the blue during our initial conversation, asking me if their standard speaker’s fee was acceptable to me.
That fee was $345 more than my Tim Hortons gift card.
The reality is that organizations, academics and conference organizers would not be inviting me or any other patients if they didn’t believe that including those with lived patient/caregiver experience makes sense – and can improve their event or project. But there’s a reason those doing the inviting aren’t pro-actively discussing a straightforward fee-for-service invitation. They embrace the concept of including patients – as long as they don’t have to pay them.
If you represent one of these groups, please put away your $5 gift cards, and consider the value-added benefit that a patient voice for your event, project, meeting or research project will bring. If you believe that including patients will improve outcomes, consider a reasonable budget to facilitate a respectful and fair partnership.
And then be willing to financially support that partnership accordingly.
Q: Can academics, physicians and government regulators be convinced to compensate patient collaborators?
NOTE FROM CAROLYN: I wrote more about patients who become advocates for other patients (and many other topics!) in my book, “A Woman’s Guide to Living with Heart Disease” . You can ask for it at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from Johns Hopkins University Press (and use the code HTWN to save 20% off the list price when you order).
Patients included. But are we respected? – from the 66 Roses blog, written by Erin Moore