2 Lessons Tech Leaders Can Learn From Unprecedented Health Research

As the National Institutes of Health (NIH) launched the All of Us Research Program, two Presidential Innovation Fellows combined our expertise in marketing and science to bring this program—and unprecedented diversity in medical data—to the public. Read on to learn why uniting communications and data is so important for ensuring that health research truly serves all of us.

Health is personal and informed by myriad factors, including our unique experiences, genes, environment, and resources, to name a few. You might guess, then, that the healthcare we receive is personalized. But too often, that’s not the case. Why? Part of the answer lies in the research that health professionals use to develop practices like precision medicine. For example, a 2016 analysis published in Nature ^[1] reported that 81% of participants in genome-wide association studies (GWAS) were of European descent, a worrying sign of populations being neglected on “the road to precision medicine.” GWAS involves scanning genomes from many different kinds of people in order to identify genetic markers that can be used to understand how genes contribute to disease. The goal is to then use this knowledge to create better prevention and treatment strategies. Yet GWAS and other medical research frequently miss a vast majority of the world’s variation.

If healthcare draws from a homogenous research pool, how can we expect treatments to understand and serve all of our unique experiences and needs?

This is where NIH’s All of Us Research Program comes in. All of Us is committed to serving the diversity of our nation by equipping researchers with data to study the differences that make each of us unique. This bold initiative is already the most diverse medical research program of its kind, and has the power to look for answers to some of our hardest health questions. The program aims to reflect the diversity of the United States and to include participants from groups that have been underrepresented in health research in the past, including underrepresented racial and ethnic, rural, socio-economic and gender and sexual minority populations. To date, it has enrolled approximately 350,000 people from across all 50 states. Of those who’ve completed all the initial steps of the program, 80% come from communities historically underrepresented in research. ^[2]

Engaging communities is no small task. While enrolling and retaining participants is a challenge for many longitudinal studies, All of Us’ commitment to previously underrepresented populations requires even more innovative approaches.

And that’s where we came in. Presidential Innovation Fellows (PIF) work as “entrepreneurs in residence” within federal agencies and apply our private-sector expertise to accelerate the success of civic solutions for all Americans. Working on All of Us, we pooled our expertise as strategic communications and scientific leaders to enroll participants and activate a research community to help usher in a more inclusive era of precision medicine research.

As PIFs, we worked hand in hand to meet these opportunities. While Georgeta focused on national and local marketing to recruit a more diverse cohort of participants, Adele focused on engaging an equally diverse community of researchers to use this rich national resource to drive health discoveries. In doing so, we identified lessons that can apply to successful product launches in any sector. Here’s what we learned.

1) Precision medicine research requires precise communications to drive awareness, trust, and engagement.

Georgeta: I worked with the Chief Communications Officer to develop data-driven national and regional campaign strategies to enroll the public. Reflecting on my experience, I find that the All of Us Research Program understands that there is no ‘average patient,’ and so a ‘one size fits all’ approach to diagnosing and treating disease just isn’t good enough. But in order to fix that, we need to look at the research that informs our treatments and medicine. If the research only represents one type of population, other communities might not benefit from medical discoveries. My job as a communications expert is to bring this message to the public and help recruit a group of participants that represent the diversity of our country. I can’t think of anything more rewarding than empowering people to take part in medical research, giving them more agency over their health, and the opportunity to drive health discoveries for a better future.

Synthesizing complex precision medicine concepts for the general public is paramount to winning the hearts and minds of those who have been left out of medical research in the past. This is especially important in light of the data we have seen around the disproportionate impact that COVID-19 continues to have on communities of color. All of Us has a unique opportunity to contribute to COVID-19 research and helping shape and strengthen this work has been a tremendous opportunity for our PIFs.

This participant-focused and data-driven communications strategy now underpins the development of the program’s national and local narrative development, earned, paid and social media. Developing more precise communications has positioned All of Us to better reach, enroll, and retain its participants.

2) Help enable medical breakthroughs through a broadly accessible and iterative approach to research.

Adele: As Georgeta led communications, I simultaneously worked with the Chief Medical and Scientific Officer (CMSO) to create the tools necessary for researchers to study All of Us participation data to enable future medical breakthroughs. This culminated in the recent beta launch of the All of Us Researcher Workbench, which offers approved researchers access to an initial set of data and tools for analysis. Partnership was important. It was great collaborating with the National Institutes of Health and Vanderbilt University Medical Center. Using my expertise in innovation, we were able to apply best practices early, including defining key metrics for a collaborative researcher environment.

Engaging researchers to use this rich, national resource to drive health discoveries is key—and the Workbench can inform thousands of research questions, covering a wide variety of health conditions. Ultimately, its rich data set will draw from electronic health records, biospecimens, surveys, and other measures creating a comprehensive set of biological, environmental, and behavioral data. As researchers from around the world come together to answer questions around COVID-19, the value of diverse participation in medical research is more clear than ever.

Through it all, we learned that launching research at this scale requires art and science.

In many ways, our complementary skill sets reflect the diverse and innovative nature of this ambitious program. From ideation and testimonial storytelling, to accelerating medical breakthroughs through a collaborative and custom data platform, we have worked together in partnership with NIH leadership to showcase the unique and tremendous impact of All of Us.

Are you passionate about the civic impact of communications and data? Interested in using your expertise for public good? Learn more about PIF at our website, and follow us on Twitter and LinkedIn to find the latest work from our Fellows.

Adele Luta and Georgeta Dragoiu are Presidential Innovation Fellows detailed to the National Institutes of Health. Both joined PIF as private-sector industry leaders in their respective fields across STEM and communications.