Eric Dishman has been named director of one of the most ambitious clinical research projects in history, the Obama administration's Precision Medicine Initiative (PMI) Cohort Program, a research study involving 1 million Americans that is designed to uncover new insights into human biology and disease. In his announcement, Francis Collins, director of the National Institutes of Health, called the study audacious.

The Dishman appointment may seem audacious too, since Dishman comes from Silicon Valley and not the world of academic medicine, where so much of the PMI research will be carried out. But the former general manager of Intel's Health Strategy & Solutions Group has deep experience in health care. He founded the team responsible for Intel's health care research, product innovation and health policy and standards-setting activities. He has also served as a key member of the PMI Working Group. He recently spoke by phone with U.S. News. (The interview has been edited for length and clarity.)



What lessons have you learned in the technology world that will serve you well in your new role?



Eric Dishman is the director of the Precision Medicine Initiative Cohort Program. Courtesy National Institutes of Health

I've been in high tech for 25 years. I first worked for [Microsoft co-founder] Paul Allen's think tank right out of graduate school and have been at Intel for the last 17 years. There are three fundamental lessons that the tech world has taught me that are really relevant to the PMI effort.

The first is how to build platforms that can scale. The PMI cohort program has got to build one of the world's largest and most sophisticated data-capture and data-sharing infrastructures to accelerate science and clinical discovery. That's something that Intel does really well, and that I've spent 25 years doing.

Second is to be unbelievably user-focused. The users in this care are the million or more Americans who will volunteer and help us discover new things about disease – things that we've never understood before because we've never had [a study] this large. Other users that we have to pay attention to are the health care provider organizations that help us recruit people – and the researchers themselves.

Another thing that Silicon Valley has taught me is to start small and iterate. NIH, very intelligently, is piloting how we are going to engage with participants around the country and piloting some of the data infrastructure – [such as] how we're going to share participants' electronic health record information. They're starting small instead of disappearing into development for three or four years and coming out with a big bang and hoping it all works.

You mentioned the need for intense focus on the needs of users. What user experience issues affect researchers?

Today, too often if you look at something like precision medicine in cancer research, you're watching world-class oncologists spend a ton of their time making the information technology work just to do their research. Trying to figure out a way to let them get back to their patient care and research without having to futz with the technology would be a good use of people's skill sets and time.



Will the push to enable many researchers to access the data produce solutions that will help in other areas of health care, such as solving the overcoming the problem of interoperability – linking health care records by different vendors in different hospitals or clinics?

If we can solve those problems for the research cohort, we'll know they're solvable and we can attempt to copy those solutions for the rest of the country. For new [data streams], like data from wearable medical devices, patient reported data and even genomic data, we have the opportunity to define some standards. That way researchers will have comparable data from across the country from the outset and won't have to play catch up later.

What's the status of the PMI project now?

I'm drinking from a fire hose at NIH today myself. We've got the initial grants out to figure out how to set [the study up] so that any American can volunteer directly, even if they're not part of a health provider organization. And then there are the pilots of key capabilities, like health record interoperability, which is basically 'learn as we go.' And there's the effort to pick the national coordinating center to help orchestrate this really complex, one-of-a-kind research cohort…



How will you handle so much data?

The precision medicine data processing challenges are the biggest of the big data problems – bigger than meteorology, bigger than astronomy, bigger than physics. Those were traditionally the fields that required the most number-crunching…

If you sequenced the genes of the 1.65 million Americans who are going to be diagnosed with cancer this year just once, and then you add clinical and imaging data from their electronic health records, you'd have 4 exabytes of data. That is the equivalent of all of the data that's in the Library of Congress. Five exabytes represents the digitization of all human words every spoken. And this is just 1.65 million Americans with cancer. Precision medicine is going to be about Alzheimer's, diabetes, Parkinson's and the prevention of disease, everything you can imagine. If you wanted to create a data center and put all this data in one place, the power bill would be $55 million a year. We're talking magnitudes of data storage and processing that we don't actually have today.

I expect and believe that the National Science Foundation and granting agencies that deal with computing are going to be as interested in the PMI cohort as health care experts because it is going to take that synergy of world-class computing research and life-sciences research to get to success.



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How do you balance accessibility and data security?

The White House has already published principles around cybersecurity and data security issues for the PMI program. There's no such things as 100 percent foolproof cybersecurity, but you certainly should be operating with world-class cybersecurity experts to guide you. It's not a bad thing that I come from the technology industry and live and breathe being able to bring people in … to make sure we're protecting the data as much as possible. In this day and age, something as visible as this is likely to be a target of attacks. It's sad, but true. We're well aware of that. We're planning for it, and are building an infrastructure that will be best in class to address it.

Can we imagine a day when anyone with a research interest, even average Americans, can access the data and use it for research?