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it might be possible to look at a patient’s genotype to see what kind of drugs or vitamin supplements might work best for them. Another idea might be to see which people are predisposed to, say, colon cancer, and then use that information to steer them toward colonoscopies at younger ages.
Handling the personal data is one of the inherent rubs of all collaborations of this kind, since there are plenty of unpleasant things people might learn about their health through hard-core genomic and proteomic screening. PeaceHealth, Adler says, “will never ever go outside the lines of patient confidentiality and HIPAA protections that are mandated by law. We’d never engage in any activity that would violate patient full knowledge, participation, and choice.”
Still, the scientists really want to be able to dig deep into the data and find things they weren’t specifically looking for from the beginning of a research project. That means not just doctors and scientists, but ethicists and sociologists need to craft systems to make people comfortable with being participatory—the last piece of Hood’s “P4″ puzzle. Key to making that happen, Hood says, is making sure the data doesn’t contain identifying information. He adds that people should also be allowed to choose how much data they want to receive.
“We have to make sure these data are available for mining in the future,” Hood says. “If you say, ‘Look, if we mine this data for the future, it’s going to change the health of your kids and grandkids,’ that’s a pretty strong point for a lot of people, and they’d be willing to think about it.”
Mauricio Flores, a lawyer who joined the P4 Medicine institute as executive director in December, says work needs to be done on developing procedures that provide more back-and-forth communication between patients and researchers, beyond the typical informed consent form that people sign at the beginning of a study. “We need to go beyond the IRB model,” he says, referring to institutional review boards charged with protecting patients.
The collaboration was sparked by an introduction from Tom Cable, the longtime venture capitalist who serves on the board of the Institute for Systems Biology. Cable got to know PeaceHealth through an initiative to build a new medical center for the San Juan Islands. Hood says Cable urged him to consider PeaceHealth as a community partner, and encouraged PeaceHealth officials to attend one of Hood’s public talks at Town Hall in Seattle.
While the initial meetings led to today’s collaboration, the implementation of P4 Medicine can’t move fast enough for Hood. The P4 Medicine institute needs an information technology partner, and Hood says he doesn’t think the current offerings on the market today are up to this kind of task, capturing and analyzing billions of data points on genes and proteins. And when we spoke two years ago about the Ohio State collaboration, he said he hoped the first pilot project would get underway in six to nine months, which didn’t happen. He didn’t offer a timeline this time for getting PeaceHealth’s pilot projects up and running.
Still, Hood says he’s as enthusiastic as ever about the vision and growing acceptance of it. He says he’s hopeful he’ll enlist another partner—an academic center in the South that will represent African-American patients “fantastically well.”
Adler, of PeaceHealth, sounded equally bullish about his organization’s role. “The lens at which we look through the world isn’t just through the lens of a hospital,” Adler says. “Our mission is to focus on the health of individuals and communities. There just haven’t been many tools with scientific evidence to support wellness, for us or anyone else in U.S. healthcare.”
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