Tuesday, April 23, 2024
4/23/2024
Building a participant community for the All of Us Research Program that reflects the diversity of our country – and keeping them engaged for a decade or more – requires purposeful precision engagement. As the program has built an infrastructure to enroll participants, collect data, curate information, and facilitate physical measurements and biospecimen collection (PM&B), HCM has been a vital partner since the beginning. We have built a robust engagement infrastructure to reach, educate, and motivate individuals from communities that have been historically underrepresented in research (UBR) to participate in the program. Our engagement approach is grounded in best practices and fueled by the knowledge that impactful engagement requires you to meet people where they are – not only where they live, work, and play, but also where they are along their engagement journey. This journey begins with awareness, moves towards enrollment, and nutures ongoing participation in the All of Us Research Program. To enable sustained, impactful engagement with potential participants, we have built relationships with key influencers based upon trust, transparency, and bidirectional communication – the same core values central to the All of Us Research Program. What we have accomplished. Deep relationships across key communities have been leveraged and community-engaged approaches used to design, develop, and deliver tools and experiences for multiple audiences. Activities and results have been tracked to inform the iteration process to improve efficiencies. Impact and scale have been achieved through partnerships with national organizations with the infrastructure to localize the program. Through our trusted partnerships, we have brought the All of Us Research Program to neighborhoods, college campuses, churches, professional conferences, festivals, and other venues where potential participants live, work, and play. HCM has built, nurtured, and engaged a national network of 1,214 organizations. Our relationships with these organizations resulted in 902 of them undertaking at least one learning activity about All of Us. We created the opportunities, tools, and trainings that resulted in 412 of these organizations taking the next steps to engage with their community in at least one activity, which is a 46.7 percent activation rate. Where we are going. Over the next five years, this infrastructure will be expanded to increase awareness of All of Us, motivate individuals to enroll, engage with participants to retain them over a decade or more, and nurture an ecosystem of researchers hungry to use the data. The individual components of the engagement infrastructure will be housed in the new Engagement Innovation Network (Network) and fueled by a new Engagement Incubator (EI). The EI will provide a community engagement structure that employs community-based and participatory-engagement approaches to develop experiences for multiple audiences that can be delivered in a variety of settings, which are replicable and scalable. Best practices will enable efficiency and impact. Program data and metrics will be used to develop and optimize our strategy over time, and activities will be aligned to keep pace with key milestones. HCM is comprised of the nation’s leading experts in community, provider, multicultural, and digital engagement, as well as experiential learning. We have expanded our team to meet the challenges of this next phase of engagement work and have brought on new team members including: Brightline Interactive and Notiontheory to expand our ability to develop a range of digital experiences on a variety of platforms; as well as the National Minority Quality Forum (NMQF) to bring a critical convening ability and reach into the minority research community. The impact of our activities to date, as well as our vision for engagement over the next five years, will put the program on a path to reach its ambitious goals, while remaining true to its core values and enable research that will improve health outcomes for individuals and communities that have been historically underrepresented in research. HCM is pleased to submit this proposal in response to the funding opportunity OT-PM-19-004. Our submission is in response to all five task areas.
HHS’ Tracking Accountability in Government Grants System (TAGGS) website provides access to detailed descriptions of grants, loans, aggregated direct payments and other types of financial assistance awarded by the HHS Operating Divisions (OPDIVs) and the Office of the Secretary Staff Divisions (STAFFDIVs).
