Q&A: Tech expert and cancer survivor to lead U.S. 1-million-person health study

National Institutes of Health

Q&A: Tech expert and cancer survivor to lead U.S. 1-million-person health study

A technology guru and cancer survivor has been tapped to head President Obama’s ambitious 1-million-person personalized medicine study. Eric Dishman, who now heads the Health and Life Sciences Group at Intel Corporation in Santa Clara, California, will become director of the National Institutes of Health’s (NIH’s) Precision Medicine Initiative (PMI) Cohort Program next month.

Dishman, 48, served on a working group that produced a plan for the study aimed at untangling links between genes, lifestyle, and disease. He is not an obvious choice to lead the cohort program: He does not have a background in genomics or large, long-term health studies, nor even a Ph.D. (although he did do graduate work in communications).

But Dishman knows health technologies, which will be a key part of the study. At Intel, he oversaw research on devices to help Alzheimer’s patients and elderly people living independently. Dishman also battled a rare type of kidney cancer for 23 years. Several years ago, he had his tumor DNA sequenced, which pointed to a treatment that he says helped save his life.

In an announcement yesterday, NIH Director Francis Collins said Dishman “brings a wealth of health innovation experience to the PMI effort—as a social scientist and researcher, entrepreneur and business leader, patient and patient advocate, and policy advocate and thought leader.”

Dishman recently spoke with ScienceInsider. (The interview has been edited for clarity and brevity.)

National Institutes of Health

Q: Why do you think NIH chose you to head this huge study?

A: I think I'm a weird mix of a bunch of different capabilities that they need. There are tons of scientists, brilliant people around NIH who know much more about cohorts and statistics and epidemiology than I ever will. I'm going to be counting on them to help me. But I think it's in part because I bring a social science perspective, and a patient perspective, to this new kind of research relationship we're trying to develop with participants. We’re not just treating them as subjects.

And then [at Intel], I started funding grants on what we call m-health, or personal health technologies before NIH or anyone else was paying attention 15 years ago. And this PMI cohort effort is really about developing a data sharing platform. Having worked at Intel, it’s a company that knows how to deliver that in an open way so that many others can innovate on top of it.

Q: What do you see as some of your biggest challenges?

A: The one I've heard over and over again from people is focus. If the PMI cohort effort tries to be all things to all people, address all diseases out of the gate, collect every data type we can imagine, we'll go both financially and intellectually bankrupt.

One thing I will really be pushing for over time [is doing] platform releases. We'll be very careful in saying in the first iteration: “It's very focused on these data types, here's the reasons why.” Over time, we'll add more measures to those that have been vetted as opposed to building the all-singing, all-dancing perfect study that never gets off of the ground because it falls under its own weight.

Q: How will you make sure that the cohort represents people who don’t have access to smartphones and the Internet?

A: The issue of who has access to different technologies has always been in place. At the same time I’ll tell you the first smartphone studies where we could actually study anybody using [them] for more than a month were actually homeless people. Not corporate executives. Think about it. Somebody who has no telephone number, has no address that’s consistent suddenly having a smartphone as your kind of digital home as you're trying to make your way in the world. So we can't always assume that our stereotypes about access to technology are true.

Q: What else is important to know?

A:  I will bring a very disciplined approach to making sure that we're user experience focused. The NIH folks don't know this yet but we're going to be writing what are called MRDs, PRDs—marketing requirements documents, and platform requirements documents. This is just kind of bringing the discipline of industry. NIH is building a platform that needs to be useable and scale. I want to get everybody excited about the next release of the PMI platform in the way they used to get excited about the next release of Windows 95.