In recognition of the broad range of communities with stakes in the American health care system, the Patient-Centered Outcomes Research Institute (PCORI) actively seeks to engage these communities to help guide PCORI activities and the research they fund. To better understand how three of these stakeholder communities—purchasers, payers, and industry—view, understand and use comparative effectiveness research (CER), PCORI commissioned the RAND Corporation and the National Pharmaceutical Council (NPC) to perform an independent study.
To do this, we conducted ten telephone and Web-enabled focus groups with four purchaser, three payer, and three industry subcommunity representatives. Purchaser subcommunities included small employers (<50 employees), medium-sized employers (50–499 employees), large employers, (500+ employees), and business coalitions. Payer subcommunities included private, public, and integrated payers. Industry subcommunities included device and diagnostics manufacturers, biopharmaceutical companies, and durable medical equipment manufacturers. The study involved a total of 75 participants, with 28 in purchaser discussions, 22 in payer discussions, and 25 in the industry discussions.
Focus group questions centered on getting stakeholder views on health-related decisions, information needs, and CER; stakeholder involvement in research; PCORI's mission, research, and initiatives; and the value of CER. A number of key findings emerged:
- Purchasers, payers, and industry communities make a variety of health decisions and seek information from multiple sources.
- Familiarity with CER is high among payers and industry but not among purchasers.
- Involving purchaser, payer, and industry stakeholder communities in CER beyond an advisory capacity will be difficult unless CER is aligned with business interests.
- Purchaser, payer, and industry stakeholder communities support PCORI's mission, but there were concerns that its scope is too broad, which could limit its effectiveness. Concerns were also expressed about a perceived lack of focus on translation of research findings.
- Purchaser, payer, and industry stakeholders agree that PCORI's funding portfolio prioritizes high-prevalence, high-cost medical conditions. The conditions that are priorities for each group differ, which is to be expected, given the large number of ways to rank more than a dozen conditions.
- The idea of priority populations resonated with some payers but did so less with employers and industry stakeholders.
- Purchaser, payer, and industry stakeholders viewed the two example “real world” studies as useful but had different opinions about how the results could be translated into actionable information for their stakeholder communities. They also suggested ways in which the study design could be changed to better address their information needs.
- Familiarity with the National Patient-Centered Clinical Research Network (PCORnet) is low for most groups, but stakeholders saw value once PCORnet was described. They also had opinions about potential research topics relevant to their interest areas that could be explored using PCORnet.
- All purchaser, payer, and industry stakeholder communities saw value in CER for patients, providers, and other stakeholders.
- Cost information is important in the decisions of both purchasers and payers.
The findings in this study should help funders and researchers strengthen engagement opportunities with difficult-to-engage but vital stakeholder groups. An important implication of these findings is the emphasis these stakeholders placed on the need for relevant, usable, and properly translated information. They told us about the information they need, how to share it, and how to make it usable. Discussions with these stakeholder communities also revealed some gaps in their familiarity with CER and PCORI work. To maximize the opportunities for CER to have an impact, these gaps need to be closed.
 Integrated payers are organizations that serve the dual role of both the provider of health care services and the payer of services.
 To better address disparities in the U.S. health system, PCORI has identified priority populations, or groups of individuals who shoulder a disproportionate burden of disease. PCORI's priority populations include racial and ethnic minorities; low-income individuals; older adults; residents of urban areas; residents of rural areas; women; individuals with multiple comorbid conditions; children; individuals with low health literacy; individuals with disabilities; individuals with rare diseases; veterans; and the lesbian, gay, bisexual, and transgender community.
This research was sponsored by the Patient-Centered Outcomes Research Institute and conducted by RAND Health.