Paying patients for their expertise

May 15, 2014 — 3 Comments

ExpertThanks to the work of organizations like the Society for Participatory Medicine and patient advocates like e-patient Dave, the voice of the patient is being heard. And I’ve written before about organizations like the ImproveCareNow network where patients and families are treated as equal partners in quality improvement efforts.

I love that patients and families are being recognized for their expertise and that healthcare organizations are starting to involve patients as team members from the beginning of projects. I also love that organizations like PCORI (Patient Centered Outcomes Research Institute) are recognizing the importance of asking patients the research questions and outcomes that are most important to them.

So this is all really good, right? Yes, but…

If healthcare should be designed with patients at the center, and if patients have so much expertise, why aren’t they getting paid to provide it?

It seems reasonable to expect that a patient speaking at a medical conference should get a similar fee to that being offered other speakers and this is starting to happen. Similarly, if researchers plan to involve patient experts in their research studies, they should include payment for those services to patients within the grant proposal. This, too, is starting to happen. But it gets a little more complicated when you think about the role of patients on committees or quality improvement teams within a hospital or health system.

Let’s say a hospital wants to put together a team to develop a better process to get patients from the emergency room to a hospital bed. Team members might include doctors, nurses, administrators, transporters, etc. Patients should also be included and would, arguably, be the most important members of such a team. But patients would be expected to volunteer their time while all the other members of the team would likely be hospital employees serving on the team as part of their jobs.

For many patients with chronic medical problems, the out-of-pocket costs of care are huge – even with health insurance. Many patients and their families forego vacations and need to set up payment plans with their hospitals to pay their bills. Why are these (often financially strapped) experts being asked to provide their services for free?

Some advocates suggest that patients should just demand pay. But, where should the money to pay a patient come from given that hospitals generally function with very tight budgets?

Also, a patient is a customer of a hospital so would paying patients introduce bias? Would paid patient experts be afraid to say negative things about the hospital? Perhaps hospitals should create salaried positions for patient experts with clear requirements, similar to other professionals – doctors, nurses, dietitians, social workers, etc. And perhaps it should be an expectation that hospitals find money in their budgets to fund these positions in the interest of improved patient care.

Or is serving on a committee or quality improvement team similar to enrolling in a clinical trial? You want to make it easy to participate but you don’t want to introduce bias (or attract people whose motivation is purely financial) by paying too much.

I don’t know the right answer but we need to engage in the dialog. How can we say that patients should be at the center of everything we do in healthcare and then provide them with minimal, if any, reimbursement for their time and expertise?

3 responses to Paying patients for their expertise

  1. LOVE this discussion. Here’s one way for people-commonly-called-“patient” to find a pathway to honoraria when serving healthcare transformation: help the institution seeking their input and expertise identify grants that would provide the money.

    There are a number of foundations that are dedicated to transforming the healthcare system. I think that the Society for Participatory Medicine might usefully start connecting with West Health, the Gordon & Betty Moore Foundation, and other well-funded non-profits whose stated mission includes driving innovation in healthcare delivery.

  2. This is a great post, Beth. I think that the evolution of my position as a Family Partner shows how medical institutions are starting to appreciate the value of patients as partners. They are realizing that better things are happening faster when there is a moral agenda rather than simply a financial one, and that that agenda, the patient stories are helping to allay fears and improve both health and care. I really appreciated this post, and i look forward to innovating with you around ways to make this happen on a broader scale!

  3. Great questions Beth! I am all for people getting compensated for their work. Patients and families who give time and resources to improve health care should be compensated. Period. But what constitutes compensation? Does it have to be a pay check? What if compensation comes in the form of better care, better health, and lower costs? Is that enough? Is it immediate enough?

    Further, what if the system is redesigned to center on patients, but it’s not just one or two who shoulder all the work. What if there are many. How do we harness the collective wisdom (we’ve heard Peter Margolis say it before!) and experiences of this vast community of experts and feed it back into the system to drive improvement? Many hand make light work.

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