Giving Patients Control
“There is a growing population of people who want something more granular than that,” countered Greg Biggers, a council member of the Genetic Alliance. “Do you think we can get more granular than that?” Dr. McGuire asked.
Biggers, who is also CEO of Genomera, replied, “absolutely.” Genomera has developed a personal health collaboration platform that facilitates sharing by individuals of genomic and phenotypic information. “People store their data in this system in the cloud. But each individual controls where their data can flow.”
While Biggers had no moral objection to researchers obtaining consent through blanket authorizations, he expressed how social media is changing the expectations of patients. “As people are finally beginning to become comfortable with granular settings on Facebook, so that not every photo is shared with everyone, similar things are beginning to happen in health,” Biggers said. “There is a new tide coming into the harbor of health research, a tide of empowerment for the people that doctors call patients.”
Social media and smartphones, he noted, have sped up the sharing of data and securing of patient consent that once required creating entire organizations in the 1990s and developing customized technology tools in the 2000s. “Where we’re headed is this concept of a network of networks that choose to cooperate, that federate together to get research done. And it’s beginning to happen.”
That desire to federate satisfies not only the agendas of patients but especially those of researchers eager to aggregate larger volumes of data. The commission’s challenge will be balancing the interests of both groups by ensuring any patient-protective recommendations on data sharing that it may make don’t add undue burdens in time or logistics that discourage new research.
Also addressing the commission was Leonard D’Avolio, Ph.D., associate center director for biomedical informatics with the U.S. Department of Veterans Affairs’ Massachusetts Veterans Epidemiology Research and Information Center (MAVERIC) in Boston. The 130-person multidisciplinary R&D center is one of three VA sites involved with the agency’s recently launched Point of Care Research Program, which aims to develop a better alternative to either costly, time-consuming randomized clinical trials or bias-prone observational studies.
Dr. D’Avolio said the VA has opted not to share data with the public, “because our responsibility to the veteran is to maintain their privacy first and foremost”—but added that researchers with “valid” scientific questions can access the data after undergoing VA’s consent process.
With research interest in veterans high as so many return from Iraq and Afghanistan, however, Washington will need to develop policies that protect veterans’ identities while promoting data sharing by investigators and patient groups with a stake in future treatments. Developing recommendations that enable that and other research is one way the commission can prove valuable.
Another important issue is setting parameters for patient consent. Dr. McGuire’s study offers three variations that are worth study by the commission. So too is the discussion by the speakers on authorizing consent based on circumstance, though just what those circumstances might be will be up to the commission to determine.