Integrating participants as partners in research governance and operations: an approach from the All of Us Research Program Engagement Core.

OBJECTIVES: During the last two decades, researchers and funders increasingly recognised the value of engaging patients and communities in research. Despite progress, community engagement remains challenging. There are few examples of successful participant engagement in governance of large-scale research programmes. Here we describe efforts to engage participants as partners in new governance roles in the All of Us Research Program, a precision medicine research initiative which intends to enrol at least one million participants. Using intentional, participant-centric engagement strategies, the All of Us Engagement Core recruited and integrated a diverse group of participants into governance roles including Steering and Executive Committees. Evaluation measures included a survey to assess Consortium Members' readiness for participant engagement. RESULTS: Over a 3-year period, all items on the survey increased (higher readiness). Of the 291 respondents to the 2021 survey, respondents most frequently agreed that participant perspectives are essential (100%), participants understand enough to contribute meaningfully (94%) and participants should be involved in setting goals (96%). Respondents least frequently agreed that participants should have an equal voice in Working Groups (75%), Steering Committee (69%) and Executive Committee (63%). CONCLUSION: In conclusion, participants can be effectively integrated into large-scale research governance, which is associated with increased researcher readiness for engagement.

Health Care Equity in the Use of Advanced Analytics and Artificial Intelligence Technologies in Primary Care.

The integration of advanced analytics and artificial intelligence (AI) technologies into the practice of medicine holds much promise. Yet, the opportunity to leverage these tools carries with it an equal responsibility to ensure that principles of equity are incorporated into their implementation and use. Without such efforts, tools will potentially reflect the myriad of ways in which data, algorithmic, and analytic biases can be produced, with the potential to widen inequities by race, ethnicity, gender, and other sociodemographic factors implicated in disparate health outcomes. We propose a set of strategic assertions to examine before, during, and after adoption of these technologies in order to facilitate healthcare equity across all patient population groups. The purpose is to enable generalists to promote engagement with technology companies and co-create, promote, or support innovation and insights that can potentially inform decision-making and health care equity.