Limited role of patient input in specialty drug coverage policies.

Despite increased financial contributions towards care, consumers' role in shaping their insurance benefits is unclear. To examine the role played by patient input when US commercial health plans formulate specialty drug coverage policies, along with the benefits and challenges of considering this input. We employed a parallel, mixed-methods approach. First, we reviewed health plans' policy development processes as reported on their websites. Second, we reviewed a data set of private health plan coverage decisions for specialty drugs and examined whether the evidence cited in policies included patient-reported outcomes (eg, health-related quality of life endpoints) and patient-based methodological designs (eg, interviews or surveys of patients). Third, we performed a survey (N = 21 respondents) and interviews (N = 5 interviewees) with plan decision-makers to determine the current role of patient input in plan decision-making, and the benefits and challenges of incorporating this data when formulating specialty drug coverage policies. We found that plans do not commonly solicit patient input when developing coverage policies, with only two instances of limited interaction between plans and patients or members. 1,316 (9%) of the studies plans cited in their specialty drug coverage policies included at least one patient-reported endpoint, and 0.4% (N = 62) used a patient-based methodological design. Of studies with patient-based designs, 40 used interviews, 26 included surveys/questionnaires, and one concerned shared decision-making (design categories not mutually exclusive). Almost half of the survey respondents reported having never engaged with patients or members when developing coverage policies. Among respondents who had engaged with patients or members, most reported doing so only rarely. The survey and interviews highlighted various benefits of soliciting patient input, including the value of obtaining a humanistic perspective, and several challenges, including resource requirements and the quality of obtained information. We found a notable lack of patient and member engagement by commercial health plans when formulating drug coverage policies. Survey respondents and interviewees identified benefits of accounting for patients' and plan members' values and preferences in specialty drug coverage policies, but also reported a number of important challenges to doing so. National Pharmaceutical Council provided funding for this research.