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!