Ending Patient Volunteerism. How can Patients be Compensated?

Should patients be compensated for participating in research, studies, and advisory counsels? The simple answer is yes. Not only is it the ethical thing to do, it also will help improve health equity AND healthcare overall. Why? Because patient volunteerism (not paying patients) means that only people who can afford the time and expense will participate in the research or study. Join us on the next HCLDR tweetchat to discuss this topic and the framework for compensating patients.

A hot topic

Last week several members of the HCLDR community engaged in a short, yet lively discussion on the topic of compensating patients for their time in research, studies, and advisory counsels. Jan Oldenburg kicked things off with this statement:

Oldenburg is highlighting the sad reality that the “default position” in healthcare is not to compensate patients for their time, effort, and expertise. This despite the healthcare industrial complex spinning out $Trillions in profits – something Casey Quinlan colorfully points out:

Grace Cordovano in a DM, shared a number of fantastic references and information from a presentation she has given on this topic. I know I can’t do this topic justice on my own, but I thought we could scratch the surface on the next HCLDR and then dive deeper later this year with patient voices leading the conversation.

A moral obligation

In doing the research for this week’s high-level discussion on the topic of patient compensation/patient volunteerism, I came across a fascinating article about the ethical considerations for compensating patients for their involvement in medical research. The author Joanna Różyńska made this powerful statement:

The reimbursement of direct costs has a potential to enhance justice in research not only by reducing inequities in access to research for those who otherwise could not afford it, but also by contributing to the fair distribution of clinical benefits associated with participation.

Her paper argues that there is a prima facie moral obligation of offering payment to research subjects. Why? Because medical research is meant for the benefit of EVERYONE (social beneficence and the maximization of the common good) and there is therefore an obligation to ensure their work is as good as possible and representative of the people that work is meant to benefit.

Różyńska and HCLDR community members on Twitter rightly point out that not offering compensation means that only those who can afford the time and expense can participate in the research and study. This of course introduces a bias to those of higher socio-economic status. Where you live, and how much you earn has an enormous influence on an individual’s health. Findings from studies with this bias may therefore lead to sub-optimal results when applied to populations outside of the socio-economic level of the participants.

Resistance to Paying Patients

There is resistance to paying patients for their time and participation, especially when it comes to advisory counsels.

There is a concern that payment raises the risk of “undue influence”. Here is an example of that argument: If someone is need of money, will they be truthful in their feedback, especially if they know that a particular response may disqualify them from further participation and thus an end to the compensation?

There are also economic challenges. Federally Qualified Health Centers (FQHCs), community health organizations, and grassroots healthcare organizations have little to no operating margins. This makes it difficult for them to pay patients for participating in advisory counsels.

Lastly, there is also a prevailing “belief” in healthcare that patients should feel that participation itself is a reward…which goes back to Quinlan’s tweet about cold bagels.

I have no doubt that the HCLDR community will find these to be hollow arguments. The question is how do we change the default behavior in healthcare to one where patients are compensated?

Payment Frameworks

Różyńska in her paper offers the following guidelines for a “morally sound” payment practice:

  • recompense for reasonable expenses, but not for lost wages (or loss of other reasonably expected profits – because that means people of higher socio-economic status would get paid more for the same work/input);
  • remuneration as a reward for a patient’s valuable contribution, provided (i) the remuneration meets standards of equality, adequacy and non-exploitation, and (ii) it is not overly attractive, i.e., it does not constitute undue inducement for participation or retention, and does not encourage deceptive behaviors;
  • remuneration as a market-driven price, provided (i) the remuneration is necessary and designed to help the study achieve its social and scientific goals, (ii) it does not reinforce wider social injustices and inequalities; (iii) it meets the requirement of non-exploitation; (iv) it is not overly attractive.

Thankfully there are a number of frameworks that exist that provide guidance on how to pay patients for their time and effort (thank you to the many folks on Twitter who shared these):

Join the HCLDR community at the weekly tweetchat on Tuesday November 1st at 8:30pm ET (for your local time click here) when we will discus the following question:

  • Q1 If paying patients was the norm, would there be fewer advisory counsel positions? less research? Or is this just a false argument?
  • Q2 What ideas do you have to change healthcare’s default setting where patients & caregivers are not compensated for their time and expertise?
  • Q3 Other than compensation, what can healthcare organizations and corporations that focus on healthcare, do to encourage more patient and caregiver involvement in advisory counsels and leadership roles?
  • Q4 How might FQHCs and other healthcare organizations that have low margins compensate patients for being on their advisory boards?

NOTE: Special thank you to Jan Oldenburg for her question suggestions and for inspiring this week’s tweetchat.

References

Różyńska, Joanna. “The ethical anatomy of payment for research participants”, Medicine, Health Care and Philosophy, 24 May 2022, https://link.springer.com/article/10.1007/s11019-022-10092-1, accessed 30 October 2022

Richards, Dawn P.; Cobey, Kelly D.; Proulx, Laurie; et al. ”Identifying potential barriers and solutions to patient partner compensation (payment) in research”, Research Involvement and Engagement, 23 February 2022, https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-022-00341-1, accessed 30 October 2022

Richards, Dawn P.; Jordan, Isabel; Strain, Kimberly; Press, Zal. “Patient partner compensation in research and health care: the patient perspective on why and how”, Patient Experience Journal, 2018, https://pxjournal.org/cgi/viewcontent.cgi?article=1334&context=journal, accessed 30 October 2022

patient perspective on why and how

Grady, Christine. “Ethical and practical considerations of paying research participants”, NIH, https://www.niehs.nih.gov/research/resources/assets/docs/ethical_and_practical_considerations_of_paying_research_participants_508.pdf, accessed 30 October 2022

“Forming a Patient and Family Advisory Council (PFAC)”, American Medical Association, https://edhub.ama-assn.org/steps-forward/module/2702594, accessed 30 October 2022

“Compensation for PFAs”, Institute for Research Partnerships, https://www.ipfcc.org/bestpractices/sustainable-partnerships/preparing/compensation.html, accessed 30 October 2022

“Payment and Reimbursement to Research Subjects – Guidance for Institutional Review Boards and Clinical Investigators”, US Food & Drug Administration, January 2018, https://www.fda.gov/regulatory-information/search-fda-guidance-documents/payment-and-reimbursement-research-subjects, accessed 30 October 2022

Press, Zal. “Pay Patients? You must be kidding. – The patient advisor perspective on compensation”, The Beryl Institute, 7 November 2018, https://www.theberylinstitute.org/blogpost/947424/310902/Pay-Patients-You-must-be-kidding–The-patient-advisor-perspective-on-compensation, accessed 30 October 2022

Image Credit

Photo by RODNAE Productions: https://www.pexels.com/photo/landscape-man-love-people-6646852/

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: