Health disparities and unequal treatment persist for priority populations (e.g., racial and ethnic minority groups, low-income groups, older adults). Many in priority populations are unlikely to seek health information, both online and offline, and have much to gain from patient-centered outcomes research (PCOR) when it is communicated through trusted dissemination channels (e.g., patient/consumer organizations). Simply ensuring that PCOR is conducted will not achieve patient-centeredness and shared decision making at the point of care. Patient/consumer organizations serving priority populations have informed the project team that their constituencies are interested in issues of equity in improving health and obtaining health care, and that current dissemination of PCOR evidence may not be equitable across populations. PCOR evidence, as well as healthcare delivery, must be disseminated to priority populations and translated so that the evidence is relevant to health information needs.
For patient-centeredness and shared decision making at the point of care to be achieved equitably, at least two things need to happen. First, PCOR must be translated appropriately for those receiving it and second, the translated information must be disseminated equitably by trustworthy sources. Consumers United for Evidence-based Healthcare (CUE) is a coalition of about 50 patient/consumer organizations in the United States. CUE is an informed coalition whose member organizations are required to be evidence-based. It is also a trusted source of PCOR evidence—for example, its members are not dominated by industry funding. With Janice Bowie, PhD, MPH, an expert on minority health and health disparities, as the new faculty lead, CUE’s efforts will concentrate on translation and dissemination of PCOR using an equity lens. The project team proposes to evaluate how patient/consumer organizations and their constituencies prefer to receive and use PCOR and health information.
The project team’s objective is to use an equity lens to increase the utilization of PCOR and health information by priority populations, via translation and dissemination of PCORI-funded research results.
The team will:
- Identify patient/consumer organizations primarily comprising priority populations, among new and existing CUE members, to develop dissemination channels for PCORI-funded research findings
- Identify how CUE member organizations and the priority populations they serve prefer to receive and use PCOR and other health information
- Disseminate and translate evidence generated by PCORI-funded research through CUE organizations by using methods informed by the team’s findings
- Assess uptake of dissemination methods using CUE’s semiannual membership survey
The project team will evaluate the success of its capacity building in several ways: increased CUE membership, particularly those serving priority populations; increased awareness from CUE members primarily serving priority populations of PCORI-funded research findings; and increased dissemination by CUE members of translated PCORI-funded research findings to priority populations. The team will continue to conduct semiannual surveys of CUE members to assess the impact of translated PCORI-funded research findings on CUE members’ awareness and dissemination of the findings.
The team’s findings will help PCORI’s efforts to achieve shared decision making and health equity in priority populations by their uptake of PCOR evidence.