Money is power. Not necessary news but something that patients and caregivers can definitely relate to. They regularly interact with doctors, researchers, pharmaceutical executives, public relations personnel, and many others have one thing in common – they are being paid for what they are doing. The patient or caregiver is not. And that difference creates a power imbalance.

In an exclusive interview with Zeal Access, parent advocate Isabel Jordan, co-founder of the Rare Disease Foundation talked about that imbalance and provides suggestions on how it can be changed.

As chair for the Rare DiseaseFoundation, Jordan is often invited to participate in discussions and meetings about various aspects of healthcare. During those meetings and discussions, Jordan said, “I assumed that I would be treated as a partner and that my opinion would be valued in the same way that it is with my own organization.” That was not the case. Her assessment was that she was often invited so that the people who organized the meeting could ‘check a box’ that the patient’s voice was being heard.

“That left me feeling used, irritated, and angry,” stated Jordan, adding, “When you are the only person volunteering at a table where everyone else is getting paid there is a power dynamic where everyone, but the volunteer has a higher rank.”

To fix that power imbalance, Jordan wants patients and advocates at those type of meetings to be compensated. That begins by talking about money. And that is where things get tricky. Since patients are the ones not in a position of power, just bringing up the conversation about money is difficult.

Jordan contends that it is up to those in power to start that conversation.

Jordan said, “money is the big elephant in the room. Nobody wants to talk about it. And if you are the patient, you are already in an uncomfortable power dynamic.”

That is why the people that need to be educated about paying patient or advocates are not the patients or the advocates. Instead, it is the people who invited them to the meeting. It is the PI, researcher, policy maker etc. Jordon noted that since those in power do not know there is a power imbalance, it is imperative that they be educated on this problem. To help start that education, Jordan and her colleagues wrote an article in the Patient Experience Journal with guidelines for patient partner compensation.

Jordan stressed that the power imbalance makes it necessary for those in power to be the ones starting the conversation. And while the subject of money is always an uncomfortable topic, it needs to be stressed that until those in power treat patients equally by compensating them for their time, two things will continue. First, they will only hear from a small portion of the patient advocacy population – largely those with the financial independence to attend those meetings on a regular basis. Second, that power imbalance, whether they know it exists or not, will continue and likely result in the value of patient’s voice (consciously and unconsciously) being undervalued.

The guidelines also are important for the simple reason that patient partners may need to be compensated differently. Some can be paid personally while others may need to be compensated in other ways due to restriction related their pension, insurance or workman’s comp.

Jordan said the guidelines provide a framework to start the conversation and that conversation should occur at the beginning of any relationship. “Patient compensation should be budgeted at the beginning and if they want to have patients as partners, they should set aside a certain amount of the budget for them. And when you actually engage with the patients, they should be clear at the beginning what is budgeted and ask each patient how they want to be compensated (do you want cash, access to educational opportunities, a donation to your charity?). These are the questions that should be asked because every patient has a unique situation.”

Finally, Jordan stressed that until patient partners are properly compensated, the power imbalance will continue and PIs, researchers, healthcare workers, and policy makers will never receive an accurate portrayal of the patients’ perspective.

Our readers are strongly encouraged to read the guidelines in their entirety at www.pxjournal.org

For more interviews with leaders from the Canadian non-profit sector, visit zealaccess.ca/stories

Reference

Richards DP, Jordan I, Strain K, Press Z. Patient partner compensation in research and health care: the patient perspective on why and how. Patient Experience Journal5(3). Available at: pxjournal.org/journal/vol5/iss3/2