OBJECTIVES

Patient and consumer engagement in specialty drug coverage policy development is unclear. We examined how and to what extent patient/plan member input is considered when developing specialty drug coverage policies by reviewing health plans’ publicly-available guidance on policy formulation, examining whether plans cite patient-centered endpoints or designs in their specialty drug policies, and by surveying health plan representatives.

METHODS

First, we reviewed coverage policy development guidance posted on the websites of the 17 commercial health plans in the Tufts Medical Center Specialty Drug Evidence and Coverage (SPEC) Database. Second, we used the SPEC Database to determine the frequency that citations in coverage policies include patient-centered endpoints (e.g., quality-of-life) or used patient-centered designs (e.g., member or patient survey). Third, we surveyed 19 health plan medical/pharmacy directors on patients’ role in specialty drug coverage policy development.

RESULTS

No plans reported soliciting patient input in coverage policy development. One allowed patients to observe committee meetings, and another allowed members to email comments to an ‘E Review Team’. Of the 14,487 citations in SPEC, only 1,334 (9.2%) included patient-centered endpoints or designs. Regarding coverage policy development, 74% of survey respondents indicated their health plan had ‘rarely’ or ‘never’ undertaken patient engagement efforts; 5% indicated their plan ‘often’ undertakes such efforts. Eighty-two percent of respondents indicated that input from patients either ‘slightly influenced’ or ‘did not influence’ coverage policy development, and 68% indicated it was ‘not probable’ or ‘somewhat improbable’ that this input would increase. Suggested benefits of patient engagement included improved treatment adherence and ability to tailor offered services/interventions to patients’ needs. Suggested challenges included insufficient time/resources to elicit patient input and the quality of information obtained from patients.

CONCLUSIONS

Patient/consumer engagement is limited in specialty drug coverage policy development. The majority of surveyed medical directors thought it unlikely patients’ role would increase.