Limited Role of Patient Input in Specialty Drug Coverage Policies

A new study in JMCP found that patient input is rarely sought for coverage policies – although plans had processes to engage physicians and medical societies when developing coverage policies, no health plan had a formal process to solicit patient input.


D’Cruz B, Graff J, Panzer A, Chambers J.
Journal of Managed Care and Specialty Pharmacy, August 2021


The goal of this study was to assess the role of patient input and engagement in U.S. commercial health plan policy development, and to understand the benefits and challenges of including this input. The role that patients and consumers play in health insurance coverage decisions is poorly understood. The authors analyzed how and when health insurance plans sought patient input and how the plans incorporated patient experiences into their specialty drug coverage policy decisions.


The authors searched the websites of health plans to review the policy development processes of 17 of the largest 20 commercial health plans in the U.S., and they reviewed a data set of private health plan coverage decisions for specialty drugs to see if the evidence cited in policies included patient-reported outcomes. In addition, they conducted five interviews with former medical and pharmacy directors involved in the development of specialty-drug coverage policies and surveyed 21 health plan officials involved in drug coverage-policy decision-making at U.S. commercial health plans.


Overall, the study found a notable lack of patient engagement by commercial health plans when formulating drug-coverage prices. No health plan reported soliciting patient input in their coverage-policy development procedures, and there were only two instances of limited interaction between plans and patients. Almost half of the survey respondents said they have not undertaken any efforts to engage patients when developing specialty drug coverage policies. Among respondents who had engaged with patients, most reported doing so only rarely. None of the health plans reported having a formal process for including patient input into coverage policy development, and only a small proportion of the evidence cited in coverage policies included patient-reported outcomes or used a patient-based design.

There was also a lack of consensus regarding the appropriate role of patient input in decision-making. Survey respondents and interviewees rarely regarded patient input to be influential. Of the survey respondents who had previously engaged with patients, 83% said that the input influenced coverage policy development “not at all” or “slightly.” This was consistent with feedback from interviewees, who also said that patient input has a limited influence on plan decision-making. Seventy-one percent of those surveyed said it was “not probable” or “somewhat improbable” that the influence of patient input would increase in the future.

While some of the survey respondents and interviewees recognized the benefits of engaging patients and members, they also highlighted challenges. Surveyed respondents said the most frequent challenges they encounter with gathering patient input are ensuring the quality of the evidence, insufficient time and staff to effectively elicit patient input, and an inadequate number of knowledgeable patient representatives. Interviewees cited the difficulty of convincing other health plan officials of the relevance of patient input to coverage policy development. Some interviewees also said not having a suitable framework for combining data from patients with clinical trial data hindered the incorporation of patient input into decision-making.


The authors are optimistic that commercial health plans can be successful in making their specialty drug coverage policies more patient-centered and recommended several steps plans could consider, such as:

  • Incentivizing plans to engage with patients. This could originate from public health programs, employer groups and other large purchasers of health care.
  • Having health plan accreditation bodies, such as the National Committee for Quality Assurance, require patient engagement as an accreditation criterion.
  • Utilizing, as a starting point, the Food and Drug Administration’s three key elements to increase patient engagement: cultural change, communication and regulatory guardrails.