Most people expect to be compensated for their time when they provide a service, except when that service is clearly intended to be voluntary, such as helping at a food bank or timing at your child’s swim meet (I’d be a lot wealthier if I got paid every time I timed a swim meet!).  When it comes to engaging patients, there is a persistent question of whether those patients should be compensated for their time.  At the EPF Congress, one of the workshop sessions discussed patient involvement in research.  The topic at my table was remuneration to patients for participation, not as human subjects, but as research partners.  As it turns out, the debate about this topic was quite lively – sometimes bordering on contentious – and the answers are not straight forward. I thought I would break down some of the issues that came up.

Based on my experience, the discussions I’ve had with patient engagement stakeholders, and the comments I heard at the Congress, there is a clear distinction being made between compensating patients for participation as research subjects compared to compensation patients for work they do as patient experts or research team members.  When it comes to patients as research subjects, there is a body of literature about this that I won’t dive into here.  Simply put, compensation for patients as research subjects ranges from zero for most surveys to hundreds of dollars for spending a day participating in a focus group or in data collection.  Having been in research for over 20 years, there are standard rates applied to these activities.  So, we will leave that topic behind for now.

Of more interest, and debate, is what do we give patients when they help design and conduct a research study.  Let’s assume that observational research and clinical research are equal for the purposes of this discussion.  How do we decide what is appropriate?  The rule of thumb for health care practitioners is to compensate them fair market value (FMV) to stay within the bounds of most legal frameworks.  But what is FMV for a patient?  What if that patient has significant disability and it is harder for them to participate?  Should they receive more?  Do we compensate patients based on the tasks they are doing, or based on how long they are providing their time?  And what do we do about geography?  In Europe, ensuring a representative patient population means including patients from different countries with different economies and costs of living.  Do we pay those from rich countries more and those from poor countries less?  In America, the same question might be asked, do we pay a patient from Wyoming the same rate as a patient from Beverly Hills or New York city?  One could argue that if we paid them the same amount, the patient from Wyoming reaps great reward for there time because every dollar will go farther in that state’s economy.  A similar statement can be made for Europe.

As the discussion continued in the breakout session, it became clear that there are very specific challenges to generating a consistent policy around how to compensate patients.  For the most part, the people at my table agreed that compensation should be based on time spent, not necessarily task.  We could not agree on how best to handle differential compensation for an expert patient (e.g. someone with a research PhD who also happens to have the disease of interest) and a lay-person patient who may still be able to contribute expertise about their disease but doesn’t have the higher education to provide additional expertise.  Geography and local economy were major sticking points. The group was essential split between equal compensation and economy or local-based compensation.  Another issue was adherence to local laws and regulations.  A one-size-fits-all patient compensation matrix may not be compliant with all applicable statutes. At the end of day, the question is whether trying to find a way to compensate patients for their contributions is even feasible.  Maybe we should simply ask them to volunteer?

I believe most patients deserve to be compensated in some way beyond travel or ancillary expenses for their help designing research or being part of a research team.  However, there are so many barriers and so much complexity, I admit to being at a loss for how to structure a compensation policy that patients, regulators, governments, and researchers would find amenable. 

The breakout session leaders promised to put a manuscript together following the EPF Congress.  I look forward to seeing their takeaways from our discussion.  I would be very interested in hearing your thoughts about this topic.  Do you have any good examples of patient remuneration policies that are working? Ideas about how to proceed with development of this policy?  Other thoughts?  Please share them here.  I fully expect to revisit this topic and will include a synopsis of any comments left here.