This agency wanted to know if an average patient like me seeking online health information would be able to easily navigate this new website. 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 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.
Hmmm. Thank you. 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 private 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 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?
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.
“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.
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’.
“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.
Let’s 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. 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 clarify something important here: as a blogger, a 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.
In fact, the first conference organizer to ever mention paying me 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.
Since that fee was $345 more than my Tim Hortons gift card, I was pleased to accept.
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 even 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 seem to 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).
Months ago I participated in a research project by an ear, nose and throat specialist on balance issues. I happened to be in his office when my husband had to have a tube put in one ear and saw the flyer about it. I wanted to participate because at age 61, balance is already becoming a concern of mine and they were also offering a $25 gift VISA card for helping them out. I spent perhaps an hour or so doing various physical exercises (some of which I could not do) and computer drills to test my cognitive skills (which were excellent, I do various types of word and number puzzles every day — so that was great to find out it’s helping).
The study was sponsored by a private company to test a small electronic device to see if it could help predict how susceptible a person was to falls. To date I have not received the gift card. I actually got up the nerve to ask about it at my husband’s follow-up appointment, and the doctor, who is very nice, was far from being offended, thanked me for speaking up because they were waiting on the funding organization to send them more cards. So it was kind of beyond his control. Which I understand — but I still have not received the card! It would be great now that the holidays are upon us.
Not sure if I should speak up again and become a nag. It’s a small frustration but a real one. And I hope he lets that company have it for not sending him the promised cards. I’m sure there are others who didn’t get them who never spoke up.
Wow, that is such a good example of how to turn people off from participanting any future research opportunities, Meghan – ESPECIALLY given that this is a for-profit company essentially taking advantage of a specialist’s access to eligible patients.
I would certainly speak up if I were in your shoes. Nag away – what have you got to lose? This might well be a simple oversight, but really, how long does it take to order enough VISA gifts cards for participants who have already spent their time to help you!??! And your husband’s specialist should NOT be waiting passively – a few assertive phonecalls to the head of the company from an influential physician can do wonders (particularly if this private company wants to preserve their reputation).
It smells to me like they’re counting on people’s reluctance to ‘become a nag” over a relatively small amount… It is a real frustration. An agreement is an agreement.
I’ve been an active volunteer all my adult life, decades working on environmental causes, coaching my kids’ sports teams or serving on non-profit advisory committees. Volunteering is just part of my DNA. So 2 yrs ago it was a natural for me to say yes when asked to be a patient/caregiver representative on a Quality of Care advisory board that met monthly at our hospital. I felt I’d be making some kind of contribution and was happy to do so, and also honored to even be asked to participate.
But there are two important issues here: the unpaid role of the volunteer vs. the sense that our time and input are simply not valued as much as the work/opinions of paid staff. The staff were all being paid to prepare/attend meetings, write/edit committee reports, or help out at community events as part of their regular job descriptions, we were expected to spend hours on exactly the same work yet couldn’t even get our parking or public transit costs reimbursed. When we asked to be reimbursed, we were made to feel like paying our own out-of-pocket expenses was just considered to be a small “donation” to the hospital. Lots of flowery lip service about this wonderful “patient engagement” the hospital CEO was encouraging. The healthcare system will continue to take advantage of free patient/caregiver labor as long as we keep saying yes to every request.
I suspect you’re so right about that last statement, B.A. And such a good point about the two important issues. Volunteers will volunteer freely for decades when they feel that what they’re doing/saying is being respected.
We featured your blog on Health World Network.
Thanks very much for sharing this post with your readers, Dr. Kollar.
I was asked to coach an executive on why he was getting low employee scores. I started the conversation and asked him how he would best get a dog to roll over – by giving the dog $100 or a kibble. He laughed and answered a kibble. The reason that it works is that the dog appreciates the kibble and has no use for the $100 bill.
Likewise, an employee usually falls into one of two types – either money or appreciation driven. His job, therefore, was to take his organizational chart and request resumes from each of his employees to prepare for his performance management exercise. I asked him to learn how his employees like to be rewarded. His scores were greatly improved. Corporations often hand out appreciation in lieu of money – it’s easier to arrange. Most projects – particularly research projects – are critically underfunded.
What a person earns often is how they are judged. A good lawyer or “a lawyer who charges $800/hour”. The payment defines the level of worth. Opinions are easily ignored until the client ends up paying the fee – then they listen.
What the Tims certificate indicated was an underfunded research project driven by people who have no true value for your opinion, but they have to check the box that the consumer opinion survey was completed.
Next time, remember time is money.
Love the dog example, Anne! And your money vs. appreciation model is right on. In my case, both the money AND the appreciation help! But FIVE DOLLARS was just downright insulting, because it meant that the money captured precisely the perceived value of my participation in their project.
Reminds me of my (now EX-) husband, who considered his employees to be damned lucky to have a good job, and fully expected them to work extra hours, month in and month out including weekends, for NO overtime pay; once a year, however, he gave each one a Christmas turkey and figured that meant they were “even”.
I know there is no privacy on internet, but so much as to make us their unpaid research!
Why don’t they send gratification to us if they already have all our data?
There should be a way to force some remuneration with coupons for food, meds or treatment discounts.
Hi Cristina – it turns out that many kinds of clinical research do in fact choose to pay patients who are recruited as study participants, although the practice can be hit and miss depending on the type of study, time commitment, etc. It’s a way to acknowledge required effort, discomfort, inconvenience, etc.
There are other kinds of research participation that represent a grey area, and that’s when patients are involved early on along with the healthcare team not as participants but more like short- or long-term consultants to the researchers.
In either case, it’s tough to “force” compensation since there’s no legal obligation to pay.
I agree completely about compensation. I’ve had to say no to things that were uncompensated simply because my time is worth something and I cannot afford to just give it away.
I also think there is an issue of power and perceived value. Being unpaid when the others in the room are paid, you are often seen as been much less valued than everyone else in the room. It is that power imbalance that is despise the most. I would love to see some kind of ePatient professionalization that tells organizations that the patient they are getting is qualified in some way to add value, and therefore deserves some kind of compensation for their time.
Thanks for weighing in here, Becky. I know that feeling – looking around the room and knowing that every other person around the table is being paid to be here. This is especially true for those of us who live with ongoing symptoms, e.g. on a day when nobody in that room has a clue what an effort it was to make it here. There are some patient training programs out there, but I wonder if those too merely serve to increase a them vs us separation (and I wonder what does that mean to be “qualified” as a patient anyway? Some of the most compelling and moving patient stories I’ve heard at conferences, for example, are from the people you might not expect to be considered ‘qualified’ – e.g. little public speaking experience, no advocacy training, no academic/professional affiliations, etc).