Prioritizing Patient Engagement in Value Assessment and Health Outcomes Research

Earlier this month, the PhRMA Foundation’s Scientific Advisory Committee for Value Assessment and Health Outcomes Research (VA-HOR) convened to evaluate research proposals for our 2025 grant cycle. The proposals were of exceptional quality, and the committee was impressed by the significant improvement in research proposals focused on patient engagement. What accounts for this year’s distinction?

The PhRMA Foundation began funding value assessment research in 2017 to support novel approaches to incorporating patient perspectives into research that seeks to understand the value of medications. Traditionally, such efforts have primarily focused on a broad societal perspective that looks at costs and benefits for all stakeholders. However, the Foundation’s work has expanded the field by mandating a strong emphasis on patient perspectives.

The PhRMA Foundation prioritizes patient engagement as it ensures research aligns with the real-world needs and experiences of those who will ultimately benefit from new medications. By actively involving patients in the research process, from early-stage development to post-market surveillance, researchers can gain invaluable insights into the practical challenges, preferences, and priorities of patients. This patient-centered approach leads to more relevant, effective, and equitable health care solutions.

Over the years, we have supported 70 studies and projects through various funding mechanisms, including Centers of Excellence grants, Challenge Awards, Frontier Awards, and our annual grants and fellowships for predoctoral students, postdoctoral scholars, and early-career faculty.

Last year, our VA-HOR Scientific Advisory Committee — comprised of esteemed scholars from both industry and academia who meticulously evaluate each proposal — expressed disappointment with the limited patient engagement demonstrated by many proposals. To ensure future applications would have a clearer focus on patient engagement, we updated our call for research to explicitly note that proposals should incorporate patient engagement at an appropriate level and required applicants to describe their engagement strategies directly in their responses to our call for proposals.

Many applicants satisfactorily responded to the call; however, some projects either failed to address the patient engagement requirement or provided responses in the research impact questionnaires that were incongruent with the actual research plan. While some applicants included patients as partners throughout their projects, others erroneously claimed that a project solely analyzing CMS data was patient-centric simply because it utilized patient demographic data.

Moving forward, the PhRMA Foundation will require all applicants for Value Assessment and Health Outcomes Research grant funding to include a plan for patient engagement, unless they can provide a compelling justification for its exclusion. For example, in pediatric intervention studies, parents, teachers, and nurses may be engaged in the place of patients.

For illustrative examples of genuine patient engagement, please refer to the valuable resources provided by the Patient-Centered Outcomes Research Institute (PCORI) and ISPOR. To exemplify the gold standard, consider the PhRMA Foundation-funded work of Surachat Ngorsuraches, PhD, and his team at Auburn University. Their research, which actively involves patients in every stage of the research process and investigates questions of paramount importance to them, serves as an ideal model. Notably, students from this program (and other programs that prioritize patient perspectives) demonstrated strong performance in the 2025 funding round. Click the link below to view the 2025 VA-HOR awardees.