Is Patient Advocacy in Danger of Stalling Out?
This is a challenging time to be a patient or a patient advocate. Extensive cuts at NIH and FDA, a retraction of DEI commitments, major universities losing their funding—all threaten to stall immense progress in patient advocacy.
Perception Issues with Industry
Patient advocacy organizations’ perceptions of industry have experienced some declines during the past four years, according to a recent PatientView survey. Four reputation attributes waned in double digits between 2020 and 2024. Although PatientView did not specify the reasons why, controversies over drug pricing, the Inflation Reduction Act, and budget reductions may be responsible for these dips in reputation:
- 10-point decline in patient-centricity
- 14-point decline in ensuring patient safety
- 15-point decline in integrity
- 9-point decline in innovation
Rx4good recently spoke with 20 patient advocacy leaders at 15 companies. We probed about the greatest business challenges leaders are facing and their views of the current state of patient advocacy and patient engagement. Here are our insights from those conversations and our recommendations for re-invigorating patient advocacy and patient-centered commitments.
Momentum Has Slowed, Expectations Increased, Budgets Seem Status Quo
Patient advocacy leaders noted considerable progress during the last decade, coupled with increased expectations and interest in patient advocacy as a valued discipline. Yet, during the past two years, patient advocacy has lost some momentum, while budgets have remained the same or, in some instances, decreased because of expense reductions.
“I do see progress, and one of the indicators I look to is the level of engagement and the sophistication of other industry advocates. I feel like we connect more.”
“I think there’s a good recognition of the need to include patients that patient advocacy can impact a large part of the biopharmaceutical value chain from the IND stage to post marketing.”
“My perspective is that we just came out of a period of rapid progress and now it feels like things are sort of stalling out.I think that in 2020, it was definitely more of a hot topic, and companies were expanding their advocacy and/or patient engagement.”
“It’s also an area where, if a company is looking to trim, it’s kind of one of the first places to go, since we’re not a revenue generating function…”
Need to Show Value
Advocacy leaders agree demonstrating strategic value to the business is crucial, with a need to quantify the impact of patient advocacy and patient engagement activities. One interviewee mentioned the outputs and outcomes of patient council meetings as an area for more refined metrics:
“We have these beautiful reports that Rx4good has created that… summarize and show some of the verbatims and insights. How do we quantify that? How do we talk about that with the company, or even publicly, in a way that really demonstrates an impact?
While efforts to measure patient engagement are underway at many companies, the methodologies are evolving, and it is often challenging to obtain the long-term company commitment and resources needed to measure impact over time. Even so, some advocacy leaders note that the human impact of patient advocacy is still immeasurably important.
I think that when you get caught up in the metrics you can miss some of the value of the things you can’t measure like the value of getting to that next treatment because you were informed. And you got on this treatment. You can’t measure the value of hope.”
Looking for the Next Best Practice and Advocacy Reignited
Our insights from interviews indicate advocacy relations leaders want to know about and effectively implement forward-thinking best practices in patient advocacy and patient engagement and formulate new, creative ways of working with the advocacy community to continually increase value and impact. We see three areas of opportunity:
A Need for Activism in a Politically Volatile Environment:
Some of the most effective and sustained advocacy movements—led by the seminal efforts of HIV and breast cancer organizations—started with passionate, inconsolable activism calling for science, medicine, and policy leadership to confront and address large-scale tragic deaths from these diseases. Today, we are facing large-scale layoffs at NIH and FDA and a pullback on DEI commitments, potentially leading to increases in mortality from diseases where progress has been made. In the context of this environment, there is notable fear among advocacy communities about what the future holds and how active they can be on critical issues.
“We are sadly hearing from advocates, unfortunately, very often now, about their fear of the unknown in terms of what this new Administration is bringing, cutting the ability for them to add comments to decisions, to not feeling welcomed at Hill Days, to really feeling under fire for a number of things.”
Rapid wholesale change in health policies, the loss of scientific brain power at key institutions, and an erratic economy are also affecting industry behavior, with reluctance to confront the administration on some of its decisions.
Passionate, evidence-based activism is needed to refuel advocacy and challenge the current health policy environment; yet understandable fear exists to act. We recommend using the remaining time this year to talk to each other, strategize together, and find areas of common ground for activism. By building alliances that are grounded in agreement on the importance of science, we can build a strong foundation for pushing back and calling for a return to evidence-based science and policy that puts patients first, not last.
Involvement at Innovation Inflection Points:
Patient advocacy’s role will grow in importance as advocacy becomes consistently involved at innovation inflection points within companies and is more ingrained in cross-functional operations. Those of us in patient advocacy need a seat at the table at major business inflection points—from early R&D to regulatory submission to commercial access— to advance the credibility and clout of our discipline.
Standardizing the Advocacy Relations Role:
“There’s a lot of people who want a piece of this now, in varying ways, and we’re struggling with the role delineation internally.”
Patient advocacy leaders in some companies and agencies now work at much higher levels internally, some even with C-suite responsibilities. But in other places, the hierarchy is less clear. The “home” of the patient advocacy/engagement function varies from company to company—commercial, medical affairs, and corporate affairs are three top landing spots. Even within a company, the function is a frequent target for a move when reorg initiatives commence. Additionally, different functions besides patient advocacy can and often do take on responsibility for various patient engagement activities. All this can lead to shifting goals and priorities and both internal and external confusion about the role and scope of patient advocacy and engagement.
Should advocacy teams be embedded across the company for greater impact? Or matrixed with one foot in a centralized function and one in clinical, medical, policy, marketing, etc., to ensure the patient is a focal point of all company decisions? Organizational structure is an ongoing opportunity for innovation.
For continued progress, working toward standardizing the role of the function, gaining consensus on the attributes of advocacy leaders, and coalescing around general principles for how advocacy operates are needed—with an eye toward the impact and measurability of the function. In addition, job specs, job performance criteria, KPIs, and compensation levels need refinement so that visionary, mission-driven people who put patients first have the clout, deep expertise in pharmaceutical drug development, and collaborative skill to drive the future of patient advocacy strategy and person-centered healthcare.
Refueling Patient Advocacy
We have made great strides during the last 10-15 years in patient advocacy. Regulators expect patients’ perspectives to be included in drug development. Published data are showing the measurable impact of embedding patients and patient advocates in decision-making. There are several organizations and initiatives in the US and Europe furthering the advancement of patient advocacy and patient engagement, including established efforts such as: Professional Patient Advocates in Life Sciences (PPALS), Patient Focused Medicines Development (PFMD), EUPATI, and DGE’s Chief Patient Officer Summits, as well as a new global professional society (International Society of Patient Engagement Professionals, or ISPEP) created to prioritize standards, share best practices, encourage innovation, and advance reputation.
The progress made is too great to go back or stand still. With a blending of targeted and planned activism, standards for the advocacy role, and demonstrated value at business innovation inflection points, we can power up patient advocacy so its perceived value is in sync with the value we know it has.
(Edited 7/11/25 to include additional groups doing terrific work in the field of patient advocacy and patient engagement)
