It’s just over 20 years since Valerie Billingham first used the phrase “nothing about me without me” to describe the point of a then-provocative panel discussion on elevating patient perspectives in healthcare conversations. In the decades to follow, these five words have become a rallying cry for patient activists. The concept of integrating patient perspectives into healthcare decision-making has not just gone mainstream; it’s become trendy. Everyone wants a patient seal of approval to validate their efforts.
For biopharmaceutical companies, incorporating patient perspectives early and often can save significant time and money by heading off potential roadblocks along the path from product development to commercialization. One method for operationalizing patient inclusion is through patient advisory boards or, when more appropriate, caregiver advisory boards. Similar in structure to physician advisory boards, these can be highly effective ways to get closer to goals such as:
- Deepening understanding of needs/fears related to treatment goals, risks and benefits
- Getting specific feedback on protocols, materials and approaches (e.g., protocol designs, informed consent/recruitment materials, patient support offerings and technology solutions)
- Supporting organizational “patient-centricity” efforts
Typically well intended, there are times when the outputs of these efforts can be, a bit squishy. It goes something like this. A small group of patients are convened for a day in a conference room at a mid-range hotel in a mid-sized city. Patients share their personal stories, Company X provides an overview of their corporate pillars and their pipeline. A blue sky brainstorm is held about ideal modes of communication with patients or hypothetical support programs that could benefit the community. At the end of the day, representatives are energized by powerful patient stories and patients head home with new friends and a deeper appreciation of our industry and the people behind it.
These are wonderfully positive outputs. They are just not tied to actionable advice or counsel. Instead of seizing the opportunity to dig deep into what patients may have learned along the way that might address real challenges facing a company, there’s a sense of perfunctory tokenism.
Sometimes this happens when a moderator is too passive to keep things focused, which is an unfortunate but relatively easy fix for the future. More problematic are the scenarios where actionable advice-seeking was never really the goal.
It may seem pedantic, but language matters. If what we’re really looking for are patient stories, we should be investing in patient story platforms and programs. They are meaningful and very important to patient education and empowerment. However, if we want patient advisors and to glean insights over time from real world experts living with a particular condition, we need to create atmospheres and agendas that spark ideas and offer a clear pathway to tangible outputs.
These questions can help as you evaluate if, when and how to assemble a patient advisory board:
- Do you have specific topics or approaches that you want feedback on?
- Is there time and a genuine appetite to integrate patient feedback into the development lifecycle?
- How will you ensure that the patients you invite are as representative of the larger patient population?
- How can you prepare attendees with baseline education (e.g., pre-reads) on meeting topics so that the discussion can be as robust and inclusive as possible?
- Do you have a skilled, motivating and inclusive facilitator versed in the disease state and industry processes?
Patient advisory boards can inform each step in the biopharmaceutical development lifecycle by surfacing patient preferences, challenging assumptions and pressure testing just about everything we do that could impact patients and their families. To do this, we have to ask the right questions and make sure we have the right people in the room. We also need to create environments conducive to the open exchange of ideas and be bold enough to ask for and act upon meaningful feedback.
MassBio will explore how life sciences companies can more fully incorporate the patient voice into the work they do at our upcoming Patient Advocacy Summit on Nov. 6th. Learn more here.
About The Author
Lead, Advocacy and Patient Relations, Syneos Health Communications
Keri uncovers and achieves mutually beneficial client and stakeholder goals through her vast knowledge of the complex, ever-changing marketplace and knack for creating effective purpose-driven programming. She brings nearly 20 years of marketing, public relations and advocacy experience, insatiable curiosity, and a genuine interest in patient and caregiver perspectives to her work. Keri holds a BA in sociology from Tulane University and an MA in mass communication and society from University of Oregon’s School of Journalism. She was selected as a Top 50 healthcare influencer by PRWeek/MMM for her advocacy work in 2018.