PhRMA Foundation Publishes Guidance for Strengthening Patient Engagement in Value Assessment and HEOR Proposals

Patients should be partners in health care research. Involving patients from the earliest stages of research can help ensure studies address the questions, priorities, and outcomes that matter most to patients.

Although patient engagement has gained increasing attention in value assessment and health economics and outcomes research (HEOR), many studies still fail to involve patients as active research partners.

In collaboration with experts and patient advocates, the PhRMA Foundation published a new commentary in the journal The Patient providing recommendations for incorporating meaningful and authentic patient engagement into research proposals to strengthen the quality of value assessment and HEOR studies.

“We want to encourage all researchers to engage with patients as partners to increase the relevance and impact of their research,” said Amy M. Miller, PhD, president of the PhRMA Foundation. “We hope these guidelines inspire researchers to make patient engagement a vital component of their value assessment and HEOR proposals.”

This commentary builds on the important work of the Patient-Centered Outcomes Research Institute (PCORI), which created six “foundational expectations” for partnerships in research. These expectations emphasize concepts such as ensuring research teams have patients from different backgrounds, incorporating patient input while the study is being designed, providing training so patients can confidently participate, paying patients fairly for their expertise and contributions, and establishing collaborative decision-making processes that position patients as equal partners.

In the commentary, authors propose two additional expectations that focus on making study findings easily understandable and accessible and ensuring the project benefits the individuals and groups most affected by the research.

The article includes a detailed table outlining all eight expectations with examples of how researchers can demonstrate commitment to each in their grant proposals to achieve meaningful and authentic patient engagement.

Together, these expectations establish a high standard for patient engagement. The recommendations aim to guide researchers in selecting the engagement activities that best fit their project, which could depend on a multitude of factors such as research topic, career phase, and funding constraints.

For example, the PhRMA Foundation, which has been funding health outcomes research by early-career investigators for over 20 years, recognizes that predoctoral students and postdoctoral trainees may have limited resources to conduct patient engagement. Even so, their research proposals can still incorporate meaningful engagement activities at an appropriate scale, such as consulting with a patient partner when designing their study.

In addition, the commentary notes that research training programs should incorporate instruction on patient engagement across all levels of value assessment and HEOR to enhance the relevance, depth, and applicability of study findings.

As value assessment and HEOR continue to evolve, meaningful patient engagement can help ensure research reflects the experiences, priorities, and needs of the people most affected by health care decisions. The authors hope these recommendations will provide researchers with a practical roadmap for building stronger patient partnerships and conducting more relevant, impactful research.