Should patients be paid?

I met many extremely talented ePatients at Stanford’s Medicine X – all motivated to educate and support others with and about their medical issues. A few weeks later, the topic of patient compensation came up in a #hcsm Twitter chat.

Personally, I’m in my fourth year as a co-facilitator of a Crohn’s and ulcerative colitis support group. The group meets once a month at a local hospital. I also moderate a Facebook group for the support group members to connect outside of meetings, and my mom and I typically host a holiday party once a year for the group.

Not only is my time uncompensated, but I am responsible for any supplies (like printing flyers to hang in doctors’ offices, Internet and phone to communicate with new members and hear concerns, and printing and faxing sign in sheets so the sponsoring organization can track our numbers) or refreshments we choose to provide. Several years ago the custom was to give guest speakers a token gift, such as a fancy pen, but I do not receive these items to pass along so guests only get my heartfelt thanks.

Of course, I did not choose to volunteer for fame and profit. I made the decision once I was healthy enough to have energy to spare and was working close enough to home to have time to make it to monthly meetings. Above all, I wanted to help educate fellow patients struggling with IBD and help fill the huge gap in education and information in my town. By restarting the support group, I hoped to use my own experiences to help alleviate some of the unnecessary fear and isolation I knew people with IBD can feel.

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 is it okay to ask patients to work for free. And patients do work for free because our causes are so personally important to us and 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. I see this all the time in my professional line of work – graphic design. Because art is “fun” people think you would have no issue doing it for free. The reward is being “allowed” to make art, right? Wrong. (See Mike Monteiro’s presentation “F*ck You. Pay Me.” for more on this phenomenon and how to avoid it.) 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. What monster would demand compensation for that? What wouldn’t you give for the chance at a cure for yourself? What wouldn’t a parent do to save their sick child? 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.

We must not forget that a patient advocating for their particular illness opens themselves up to many serious risks. These can range from stress and exhaustion to discrimination and even job loss. Of course this is not technically legal, but many states have laws that essentially allow employers to fire someone at will. I’ve personally run into workplace harassment over minor medical issues and I’m far from the only one, but that’s a topic for another post.

Many patients with chronic illness deal with pain and fatigue. Their lives are constant balancing acts between the limited amount of energy (aka “spoons“) and the seemingly endless to-do list. For people with multiple conditions, just going to the doctor and dealing with medical bills can be a full time endeavor.

The Hurt Blogger Britt sums up the mixed feelings ePatients can struggle with, “I very much want to help [...] but at what cost? When I wear myself so thin that it impacts my health, I can’t be a good advocate. Part of that is stress over not having [money]. But we keep doing it, because we love it.”

Inviting patients to conferences like Medicine X is a huge step in the right direction for the future of the medical community. Many patients (myself included) received reduced conference admission to Medicine X thanks to sponsors, some even received a travel stipend to help with flights and hotel costs. Breakfast, lunch and several snacks were provided on conference days, but that still left costs the patients needed to cover themselves. For some, such as Lizmari an ePatient who cannot afford health insurance, these additional costs were a hardship requiring help from family to get her to Palo Alto.

Should patients be paid? In my opinion, yes. If your organization is asking a patient to speak at an event then you should pay them. At the very least all expenses should be paid, or travel and conference fees if the event is a big enough draw that free admission would be equivalent to speakers fees (a good example might be a conference like South by Southwest or TED). Simply put, it should not cost a patient money to work your event.

It is extremely important to get patient voices into healthcare and this is a trend I can only see gaining traction in the future. Patients need to be compensated for their time and opinions. You’d pay a consultant? Then you should pay a patient. We often speak of “people first language.” This needs to be extended to the working world. Patients who are doing a job for you are employees first, employees with illnesses, not sick people volunteering.

What if there’s no room in the budget to pay patients for their work? The answer is to build your budgets based on the true cost of the work needed. If I held a party at my house and had my parents cook all the food, my costs would be relatively low. I should not expect to take that same budget to a restaurant and be taken seriously. If the goal is to empower patients and leverage their considerable knowledge, then the first step is to respect their time and experience and compensate them fairly in the same way you would compensate other consultants.

We want to share our stories. We are excited that health care providers and the medical community is on the cusp of recognizing the power of patients’ knowledge. We simply want to be in a position to accept these speaking and consulting opportunities. Compensating patients fairly helps us maintain our health and our lifestyle instead of sacrificing both so your medical program or start-up company can succeed. Treating patients fairly in financial matters is the next step in seeing us as whole people, not just our illnesses.

The first step is recognizing the problem. There will be resistance on both sides. Patients, taught to devalue their experience, will need to become comfortable asking for compensation. Organizations will need to re-evaluate their budgetary assumptions. I’ll be back later with another post with some ideas for implementing these ideas. I’d love to hear your feedback!

15 Responses to Should Patients Be Paid?

  1. Annette says:

    That’s a very realistic portrayal of what happens. Do you know how they compensate Dr speakers? Must be at least a handsome fee plus all expenses.

    There are Drs who make a great deal speaking at conferences around the world, by virtue of their influence and body of knowledge

  2. To tell you the truth, as a heart patient living on a small disability pension, I can’t afford to be “honored” by any more medical conference invitations.

    Thanks for this beautifully structured and refreshingly frank overview of a very common reality for many of us patient advocates, Carly. I too was at MedX and spent my time there torn between feeling honored and excited to be invited as an ePatient scholar like you, and feeling utterly exhausted and ill (in part because of all that excitement!)

    Having conference registration costs waived was the bare minimum requirement in order to be able to even consider attending (given that I knew my hotel bill would be several hundred dollars) so I was relieved to be also offered a small “travel stipend”. Indeed, I am still waiting to receive that six weeks later. (In fact, this stipend will barely cover the shared-ride shuttle vans from SFO to Palo Alto and back)and it doesn’t begin to make a dent in the $600 United Airlines flight balance still sitting on my MasterCard bill this month.

    What this means, essentially, is that for patients with means, or with rich relatives, or with a diagnosis that enables them to continue working (for money, and for employers who don’t mind granting time off), or who live a very short distance from the conference venue, being invited to share a unique patient voice at these conferences is a truly fabulous concept. For the rest of us, it’s neither practical, affordable nor good for our health.

    As a direct result of my MedX experience, I’ve recently been invited to attend another medical conference back east next summer whose organizers are keen to include patients just as MedX did. But as I said, I just can’t afford to say YES.

    Instead, I’ll keep blogging and doing my free presentations about women’s heart health (unpaid, of course!) while contemplating my future as one of the “sick people volunteering” – as you correctly call us.

    Regards,
    C.

    • Carly says:

      Carolyn, Thank you so much for taking the time to write that eloquent comment. I’m shocked you are still waiting for your MedX reimbursement! Imagine if you didn’t have a credit card you could have used to cover those costs? I wonder if they even think about the fact that you’re paying interest on the amount while you wait for them you send your travel stipend. I honestly think that in most cases it is just honest ignorance, not intentionally harming patients. I think patients also need to get better about asking for fair compensation.
      I was able to attend MedX due to a combination of getting the discount patient rate for the conference fee, having a decent job at the time I booked my flights, and having very kind friends who let me stay with them for free and ended up paying for my dinners. In the time between registering for MedX and attending, I lost my job. I decided to still go because the only major cost I still had to pay was for a rental car. It was a great experience and I feel that the deal they gave me was fair. However, I did not speak or present at MedX and my “patient persona” is not well known enough to be useful in their marketing ;)
      I was shocked to meet several patients at MedX who did not even have health insurance. I know money doesn’t guarantee a person can even qualify for health insurance (not until 2014!), but that seems so tragic to me that we have people spending their time and energy educating doctors and app developers who can then turn around and make good money and the patients can’t even afford to pay for their own health insurance? Something is wrong there.
      Best of luck to you! I hope you will continue to get invitations to events and consulting opportunities in the future that you can say yes to without going into debt. I think things will change, but patients like ourselves need to be involved in the conversation and be honest about the costs (monetary and time).

    • Larry Chu says:

      Hi Carolyn, did you get your check yet?

      I’m sorry it was six weeks and you didn’t get reimbursed. I will pass on your complaint to our finance department so they can understand how to improve their work.

      We do our best to find funds to pay for patients to travel to our conference. I’m sorry we weren’t able to raise enough money to cover all your expenses.

      I will bring your concerns to the attention of our epatient advisory board.

      • Hi Larry,
        For the benefit of other readers, I’d like to just confirm here what you and I already know – that after reading Carly’s blog post, you contacted me directly, worked tirelessly to address these concerns, and discovered some puzzling admin gaps that may have caused both the long delay (which turned out to be two months in total) as well as a travel grant amount far smaller than any other MedX ePatient had received despite your committee assessment of my application’s “high priority” status.

        Thanks to your amazing efforts (and no doubt pulling some strings!) you managed to address my concerns in a thoughtful and heroic fashion – even as you were literally flying off for your Christmas holidays.

        I really appreciated your efforts, but this scenario does serve to reinforce the challenges of inviting patients to participate in healthcare conferences like these. Conference organizers interested in truly supporting the ‘patients included’ philosophy simply have to step up to the plate to support patients with demonstrated financial needs, just as they do when budgeting for other conference expenses.

        Thanks so much, Larry and Happy New Year to you and your AIM Lab team at Stanford.
        regards,
        C.

  3. elielizabeth neary, md says:

    YES, you should be paid! You should refer to yourself as a clinical educator. What you and other like you do is incredibly valuable and should be compensated. Thank you for what you are doing…but you also deserve to be paid.

  4. Lisa Fields says:

    Carly,

    This is one of the best pieces of ink I’ve ever seen sharing if patients need to be compensated. I think you are so spot on: Patients need to be compensated for their time and opinions. You’d pay a consultant? Then you should pay a patient.

    When I was a #MEDX I had dinner with two folks I highly regard who work for organizations. Toward the end of dinner we had this very conversation. They simply didn’t realize the challenges ePatients make to be involved in medical conferences. They really “got it” and then began to bring up many of the topics you so brilliantly shared with us.

    We teach people how to treat us and I struggle with this compensation issue myself. ePatients like yourself and the ones who were invited to #MEDX are extremely valuable in so many ways.

    Dr. Chu is one of the most passionate patient advocates and he along with his colleagues who are members of the patients included community will continue to innovate new ways for patients to become equal partners in as we gather together to improve health care and improve the quality of life for patients.

    Congratulations on this amazing piece of work. It’s wonderful to review as I begin to ramp up for 2013.

    Lisa

    • Carly says:

      Thank you so much for the kind comment Lisa. I’m glad you enjoyed the article. I think this area will improve in the future and I agree that Dr. Chu is a great individual.

  5. [...] online community. Shockingly to some, people with diabetes and other medical conditions are actual human people that you can hire for a focus group of your very [...]

  6. Anyone who offers their expertise deserves compensation, money and/or otherwise. The patient perspective deserves particular attention because it has not been heard enough. Listening to these voices represents the future of healthcare.

  7. Christine Gray says:

    E-Patients should start a movement to get equivalent pay to doctors at these conferences, to make a political point. Otoh, I know a few e-patients who illustrate exactly why they shouldn’t be paid: creating websites or patient names that obscure or exploit genuine sites; spinning their disease or miraculous recovery into a full time job; NOT speaking up about the genuine dark side of the medical system, challenging no one about egregious, life-threatening errors in cancer dx and treatment which may very well have gotten them or their loved ones killed. (We had a very bad experience at Stanford/Lucile Packard. Laughable if it weren’t so tragic.) I watched a very smart, congenial rep of a medical chain scold a patient rep whose loved one had died in the midst of crazy-making medical obstruction for acting too angry. Like it might hurt her brand.

  8. Christine Gray says:

    Dear Moderator: Please change that to “being angry.” Thx

  9. Melinda says:

    I agree Carly, the way patient reps at conferences and on committees are treated leaves a lot to be desired in many cases. I’ve been invited to sit on committees and my actual travel costs might be reimbursed but I still have to take leave from work-days that I would have preferred to add onto a holiday sunning myself in Fiji rather than sitting in a windowless room trying to make HCPs see sense :)

    • Carly says:

      Thanks for sharing your experience, Melinda! It’s such a touchy issue for me because I really want to help and it is so important to get patient voices heard. But I’m already spending most of my time and money being a patient, that it’s not easy to find much extra to donate.