Precision medicine will require a lot more than just sequencing

By Jonah Comstock
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Precision medicine was a major topic at the Connected Health Conference in National Harbor, Maryland this week. In a main stage panel yesterday moderated by NEHI President and CEO Susan Dentzer, panelists discussed how personalized medicine is more than just genomics. Sometimes it’s much more simple.

“Homeless patients should not receive medications that have to be refrigerated,” Kevin Johnson, SVP of Health Information Technology at Vanderbilt University Medical Center, said on the panel. “That’s precision medicine.”

Bray Patrick-Lake, a patient advocate and director of patient engagement at the Duke Clinical and Translational Science Institute, expounded on that idea.

“I love what Kevin said about thinking about people holistically in their picture of health,” she said. “And understanding not only their genomics, but that people are very much a product of their environment and their success and health outcomes are going to be dependent on the social determinants of health, access to food, access to resources, and if we don’t start taking that complete view of an individual, we’re never going to achieve what we can and fuel the precision medicine revolution.”

Greg Simon, the executive director of the White House Cancer Moonshot Task Force, acknowledged that sequencing is still expensive and resource-intensive. Other ways to learn about people, such as biomarkers, behavioral health, and family histories, can help providers to identify the best candidates for sequencing.

“I would predict that a lot of you here are in behavioral health companies,” he said. “People who help people track what they do, who give them new ideas about exercise and diet, how to monitor your diabetes, your bipolar disorder. If we don’t make progress on the behavioral side, having people get sick and then sequencing them is not going to improve our national health.”

And if all this data is going to be helpful, it has to be put into a larger context, which is the rationale behind the “All of Us” cohort, part of the White House’s Precision Medicine Initiative which aims to collect a lot of baseline data on Americans. Simon and Johnson both spoke about other ways to collect enough data to contextualize it — namely, data sharing initiatives.

“For the first time we now at least have a recognition that EHRs and PHRs should have structured information around social and behavioral determinants people are comfortable sharing,” Johnson said. “We’re also able to compute some aspects of this either through things like geolocation: we know where you spend time and if we know something about that zip code or that census area, we may be able to infer other things about environmental exposures, socioeconomic status, other areas.

“I think we’re moving in the direction of at least being able to find the biomarkers,” he continued. “The next step is to associate those biomarkers against a very large sample of patient data to determine if specific diseases have different outcomes based on those biomarkers. That’s been done in limited capacity, but we clearly need a larger national sample, a larger international sample as well.”

Simon says the Cancer Moonshot team has been “pounding on the cancer community’s door” to encourage more data sharing, and plans are in the works to require data sharing and common standards requirements in order to work with the Cancer Moonshot.

“If we don’t create a real database in cancer, if we don’t create a real database of what every physician knows, what every outcome is, then we still have these pockets across the country that don’t know just what happened in a major center that saved a life,” he said. “If we don’t have the right data, we can’t do it. And if we don’t have it distributed equally, we shouldn’t be paying for it as just another way of treating the people who have good insurance and have great access to care.”