Supporting All of Us: Reflecting on One Year of Engagement Work with the All of Us Research ProgramBy Ronnie Tepp -
An anniversary marks a moment in time. It encourages reflection and stirs our emotions, but it also helps us to look forward and think about where we will go.
Today we celebrate the one-year anniversary of the national launch of the All of Us Research program. A visionary idea conceived by the National Institutes of Health to finally include in the medical research enterprise millions of Americans who have been historically left behind. Today marks one year since individuals, from all walks of life, have been able to enroll and contribute to this historic effort to speed up health research and medical breakthroughs with data, reviving the concept of Precision medicine.
I think back to May 6, 2018, and remember my excitement as I watched the launch day activities around the country. So many national and local organizations representing marginalized populations were actively sharing information and promoting participation in the program with the support of Team HCM. The impact of HCM’s engagement work is incredibly motivating, but it is still tempered by the recognition that barriers to participation in some communities remain a serious challenge.
Since March of 2016, the team at HCM Strategists has been working to bring awareness of the All of Us Research to communities across the country. We built an engagement infrastructure with the program to reach, educate and motivate individuals from communities that have been historically underrepresented in biomedical research. We are dedicated to ensuring that the participant community that we build is truly reflective of the diversity of our country.
This effort is about enabling biomedical research at a scale that has not previously been possible with data that has previously been collected. The infrastructure the program has put into place enables participants to enroll in the program, share and secure medical data, enable public access to health data and ship and process samples. These elements are essential to ensure a positive participant experience, and it makes this critical research possible.
Fast forward to today. It has been another year of engagement work framed by the strategic approach of building a national network of validators who are respected by our participants, supporting them with the necessary tools and working with them to develop localized messaging to create strong value propositions for participation in the program. I am filled with these same emotions from a year ago, but there is an added layer of recognition that the relationships we have forged have been deepened. The organizations we have supported have become true partners and are beginning to chip away at the barriers to participation that exist in their communities, and a real community is being built.
We still have a long way to go. We need one million Americans to lead the way to provide the information and data that will create individualized prevention, treatment, and care for all of us. We are on the right path, and I look forward to May 6, 2020, to see the continued progress towards this world-changing goal.