The need for patient advisory boards

Last month I had the opportunity to participate in a patient advisory board meeting for a company running a Huntington’s Disease (HD) clinical trial. It was a half-day meeting with most of us attending in person and several ad-board members attending virtually from Canada and Europe. What a remarkable opportunity to review and provide feedback on the trial design, protocol, and recruitment strategy. The goal of patient advisory boards is for the company to receive feedback from patients and caregivers to help increase enrollment and retention while decreasing the patient (and caregiver) burden. But feedback can only go so far, and it’s up to the company to implement a strategy to ensure they can recruit successfully.

This meeting was successful for a variety of reasons. One of the reasons that stand out is how the individuals planning it made sure there was a prep call, structured agenda, and proper questions to keep participants engaged. Additionally, they brought in a diverse group of individuals based on what the company was looking for. I know this is essential since I’ve seen ad-boards that don’t necessarily align with the patient population the company is looking to support. Not only can this be misleading, but it will impact the study design which makes it challenging to recruit patients.

Additionally, patient insight is valuable and it helps when companies recognize the importance of providing an honorarium for our time. The honorarium can help with travel expenses, lost wages, child/pet care, among other expenses. Unfortunately, there are still companies out there who don’t quite understand the importance of paying patients for their feedback.

Do patients, like me, want to help accelerate research? Absolutely! But I also know how valuable my feedback is to these companies who need it to support their business objectives. As a company (or individual), ask yourself if you’re willing to afford doing free work all the time – I’d imagine many of you would say you cannot. And if you’re unsure of how much to pay, then check out the National Health Council’s fair-market value calculator to make sure patients and caregivers are getting compensated appropriately for their efforts.

There is still more to do. Although it was a great meeting, this doesn’t mean our work needs to stop now. Engaging with the community shouldn’t be a one-off approach otherwise is it really considered patient engagement? Or is it just checking “patient engagement” off the list? Patients, like myself, want to help companies out but the only way we can do that is if we have a seat at the table. Not only that, but a company must  implement the feedback we are providing since we want to see their study succeed more than they do (Yes, that’s correct since it’s our lives on the line).

Unfortunately, I don’t think I’ll be able to qualify for this study as the company is looking for patients who are clinically diagnosed. You might think that’s a good thing, but in reality I know I’m guaranteed to get HD and could already have changes happening in my brain as I write this. Yet, I still want to help out since when it’s my turn to step up to the plate (aka eligible for the study) I’ll be ready to go.