As a survivor of a rare kidney cancer, you come to your new position with a unique perspective. Can you tell us about your experience and whether that influenced your decision to head up the All of Us Research Program (formerly the Precision Medicine Initiative Cohort)?
Looking back, I was put on the planet to run this program, but I didn’t know it at the time. After 23 years of guesswork that led to dozens of chemotherapies, radiation therapies, and immunotherapies, it was a whole-genome sequence that changed everything. And when my medical team finally understood more about the mechanism of my cancer, we found a treatment plan that worked. After that, I was quickly cancer-free and eligible for a kidney transplant. Now I’m healthier at age 48 than I was at 28. When I woke up in the recovery room after my kidney transplant, I told my wife I would spend the rest of my life making precision health care available to everybody.
You were at Intel for 17 years doing research in health care. What was most challenging and what was most gratifying about that experience?
I started at Intel in the era before smartphones. Then, PCs were for personal communications, gaming, and small business. So what challenged us most was the imagination problem — not knowing all of the ways computing would become part of the fabric of everyday life, including health care. Intel taught me how to build ecosystems with a lot of different players coming together and designing something scalable to have an impact on the whole planet. And that’s exactly the kind of thinking we need for precision medicine.
You aim to recruit 1 million U.S. participants for the study. How was that number settled on, and how do you plan on achieving it?
It takes getting to at least a million to try to understand all of the complex factors that come together to make your health what it is. I’m talking about factors like diet and exercise and stress and environmental exposures and genetic predispositions. We don’t know yet, in most cases, how those threads weave together to influence someone’s specific health status. But with data from a million people, researchers can start to tease apart the variables.
How will you go about recruiting a diverse sample that looks like America?
There are two primary approaches to enrollment. We have healthcare provider organizations in our partner network to help enroll the people they care for. And we’ll also be enrolling people directly, when they reach out through our website. In both cases, we’re trying to maximize diversity by having diverse partners — and we have high expectations for the kind of diversity that healthcare provider organizations will achieve in the people they enroll. We have a pilot with Federally Qualified Health Centers that is working to help enroll participants from vulnerable populations that have historically been underrepresented in research. And we’re starting to work with a wide range of national and community-based organizations around the country, to spread the word to their members.
How do you return research results to one million people?
We’ll return data with choice. Some people may want all of their data, some will just want information about their health, and others may be happy to provide data for research but don’t want any details as follow-up. So, part of what we’re building is a choice engine to allow people to decide how much data and information they want and when they want it.
What we can provide may also grow over time. Returning clinical information like vital signs is usually pretty straightforward. Other data types, like whole genome sequences (when we get to that), would mean moving terabytes of data around and making sure we have the right professionals and training to help people make sense of this new kind of information.
What makes you optimistic that this program will continue to flourish under a new administration?
I have great confidence about precision medicine efforts flourishing under any new administration. Disease has no partisan boundaries. When I’ve spoken with leaders in both the House and the Senate, they understood that this is the future of our health care and it impacts everyone. And they also understood that the U.S. cannot get behind in the race to invent the jobs, technologies, and infrastructure of 21st-century precision medicine. I’ve seen no evidence that this is being politicized. I’ve seen every evidence that people want this to be successful because it’s going to impact their own lives and the lives of their children and grandchildren.
Where do you see personalized medicine in 10 years?
In the near term, I anticipate that we’ll have a number of discoveries just from amassing so much data from a million people — more discoveries about drug interactions, for example. In the longer term, we might start to see study findings leading to brand-new therapies, prevention planning protocols, or a much deeper understanding of pharmacogenomics.
But even more importantly, I think there will be a shift in the thinking of providers and participants themselves. As a patient — as a citizen — you have to take some responsibility for managing your own health and wellness, and part of that is having data about yourself in ways you can use it, share it, and understand it. If we could get even half of the patient population into that proactive mind-set, that would be a coup as big as any miracle drug.