Patient experience data in formulary decision-making: Payer-reported perceptions and use

BACKGROUND: As defined by the 21st Century Cures Act, patient experience data (PED) are data collected by any person with the purpose of providing information about patients' experiences with a disease or condition. To date, limited information is available on payer perspectives and the use of PED in formulary decision-making beyond patient-reported outcomes. OBJECTIVE: To assess payer decision-maker familiarity with and perspectives on PED and their use in formulary development and benefit design. METHODS: Informal interviews were conducted with payer decision-makers to guide the development of an online survey instrument. The survey was used to collect input from a broader population of payer decision-makers to understand their perspectives on and familiarity with PED, current uses of PED in their formulary decision-making processes, and barriers to incorporating PED. RESULTS: Interviews: Six individuals participated in the interviews, representing health plans (n = 4) and pharmacy benefit managers (n = 2). Participants reported varying levels of understanding of PED and its use in practice and shared mixed views regarding organizational openness to using PED and barriers to uptake. Survey: The survey was sent to 6,960 individuals, of whom 312 attempted the screener survey (4.5%). Of these, 60 respondents progressed to and completed the full survey. Respondents reported that the definition of PED from the 21st Century Cures Act "mostly" (n = 24, 40.0%) or "completely" (n = 28, 46.7%) aligned with their understanding. In an open-ended follow-up question, respondents frequently cited non-PED sources as PED, including health care provider feedback, and claims and utilization management data. Most organizations consider PED of low (n = 32; 53.3%) or medium (n = 22; 36.7%) importance. Respondents indicate they do not commonly incorporate PED into the formulary decision-making process today, with 51.7% (n = 31) and 36.7% (n = 22) of respondents reporting that they "sometimes" or "rarely" incorporate PED into decision-making processes. Perceived barriers to using PED in formulary decisions were noted to be "subjectivity of results" (n = 44; 73.3%), a "lack of scientific validity" (n = 38; 63.3%); and a "lack of standardized measures" (n = 35; 58.3%). CONCLUSIONS: Survey responses suggest understanding of PED varies and that payers place low value on PED relative to other information sources, collectively limiting the meaningful use of PED in decision-making. Results also show uptake is impacted by various perceived barriers. Additional training is required on the scientific merit of PED and the rigorous qualitative and quantitative methods used to engage the patient community to collect and leverage PED.