Partnering for Cures—Of the Person, by the Person, for the Person: The Road to Precision Medicine

November 05, 2015

Along with technology, a culture of collaboration is key to the federal initiative

National Institutes of Health Director Francis Collins laid out the vision for the PMI, announced by President Obama in his 2014 State of the Union address, and the work that has gone into crafting an implementation thus far. One key feature of the initiative will be the building of a million-person cohort to participate in, and contribute their data and samples for, research. "This is going to change everything, but it's going to be a heck of a lot of work," Collins acknowledged. He hopes the "big, hairy audacious goal" of the PMI will inspire researchers and other stakeholders to be involved. But in what became a recurring metaphor during the session, he noted, "You can't herd cats, but you can move their food," referring to the incentives created by new NIH funding and the requirements that will come with it.

The other panelists concurred that the PMI presents a unique opportunity, given the confluence of the genomic revolution, our growing ability to track environmental influences on our health, increasing public interest in participation -- not just participation, but partnership -- in research, and more appetite for collaboration.

Much of the discussion centered on three themes:

  • Data sharing. A large part of the session focused on the need for better data-sharing infrastructure -- with patients and by patients -- a theme that will recur throughout Partnering for Cures, with panels on personal health data and the lack of interoperability of electronic health records. Isaac Kohane, chair of the new Biomedical Informatics department at Harvard, said medical research could take a page from Netflix's big data mining capabilities: "When was the last time you felt confident that your doctor remembered all the details about you and your history? It's a sad aspiration that we should say medicine should be as good as Netflix." He argued strongly that the technical barriers to data sharing are insignificant. The more difficult problems are cultural and "having smart eyeballs on this data. My students are going to Apple and Google, which, by the way, are rapidly becoming healthcare companies." On the critical issue of privacy, Bray Patrick-Lake, director of stakeholder engagement for the Clinical Trials Transformation Initiative at Duke University, noted, "There is no one-size-fits-all. People need to be able to set their own preferences." Patrick-Lake also said it is not enough for patients to possess their own data: "I've got all my data, but I don't know what to do with it. I don't know how to contribute it for research."
  • Collaboration. Panelists offered several examples of unique collaborations that are demonstrating the promise of precision medicine and how it is changing the way research is done. The NCI-MATCH trial is a complex multi-drug, multi-arm trial and a model of targeted treatment in oncology that NIH would like to see emulated in other fields. As Tony Coles, chairman and CEO of Yumanity Therapeutics, marveled, "Ten years ago, 20 companies wouldn't have collaborated on anything. But the size of the problems we're facing is so huge, we can't go it alone." NIH's Undiagnosed Disease Network brings together seven large academic medical centers and allows patients with undiagnosed conditions to upload their health data to the cloud and get themselves in front of the right physician among all those institutions. While collaboration is clearly a critical element of the precision medicine future, Anderson warned of "over-collaborating" and duplication, and Patrick-Lake cautioned against "collaborating in silos."
  • Representativeness. It was refreshing to see that substantial attention was paid to ensuring the diversity and representativeness of the participants in the PMI cohort, and to ensuring that precision medicine as a whole benefits everyone, "not just affluent white people," in the words of Patrick-Lake. "We have to understand the value case -- communities have to tell us what they value and what they want to attack." She discouraged "taking messages into communities. We need to design and build with communities. It's not, 'We have some money, we're going to do a study, and we're going to study you.'" Coles called on research leaders to "get innovative about strategies to approach populations. Who are the leaders who can help build trust and open doors?"

In closing, Patrick-Lake urged the audience to view the PMI as an "opportunity to break down the silos and have investigators collaborate across lines. See the mutual benefit, kick down some doors, and make it part of the culture."


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