OBJECTIVES: Resource burdens related to patient engagement activities can be a barrier to patient engagement in value assessment (VA), potentially discouraging assessors from fully engaging with the patient community. To ensure efficient resource use, we sought to (1) articulate a shared vision for what marks success in enhanced patient centricity in VA; (2) outline tangible, feasible actions toward achieving that success.

METHODS: On July 31, 2018, the National Health Council (NHC) convened representatives from US organizations that have produced VA assessments with participants from patient groups that have interacted with those organizations. Patients (n=18) and VA body representatives (n=6) participated in small group, semi-structured discussions. Use of Chatham House Rules increased dialogue openness. Based on notes and storyboards; NHC staff developed a summary and draft recommendations, circulated to all participants for feedback, and finalized.

RESULTS: Patients and VA body representatives agreed that the ultimate goal should be for patients to have access to treatments they need at prices they can afford. They agree that there is nothing worse than an effective treatment existing, but patients not having equitable access to it due to cost or other related barriers. Patient-centered VA should be relevant to and inform decision-making on the part of patients and providers. Participants developed seventeen recommended actions to enhance patient centricity in VA. Examples include: (1) patient groups can add health economists to their scientific advisory boards, just as clinicians are currently included; (2) VA bodies can develop a catalogue of patient-provided information they wish they had or templates from data collection tools that were useful to inform their appraisals (e.g., copy of a successful survey).

CONCLUSIONS: It is essential that patient groups and VA bodies identify and implement ways to improve patient centricity in VA. These recommendations can ultimately guide future VA improvements.