Health-Data Donors Aim to Aid Science

One of the newest ways for people to use their medical information is offering it to researchers studying health problems that affect them or their loved ones. The concept started with rare diseases and is spreading fast to more common conditions like epilepsy and depression.

To date, the Patient-Centered Outcomes Research Institute, created by the Affordable Care Act, has funded 18 “patient-powered research networks”— drawing on registries where patients with specific conditions can sign up to participate. Patients can opt to share such information their diagnoses, symptoms, treatments, genetic tests and quality-of-life measures

“I might be fine sharing information about my colon cancer, but not my mental-health data,” says Sharon Terry, CEO of Genetic Alliance, a nonprofit consortium of disease-advocacy organizations that coordinates the research networks. Participants can also change their preferences over time. “As the mother of a young child, I may not be interested, but if my child developed Crohn’s disease, I may want to contribute everything I could,” Ms. Terry says.

Besides letting patients select “yes” or “no” to sharing their data in various circumstances, the options also include “ask me.” “That means, ‘Tell me more about who you are, and why you want my data and then I’ll make a decision,’ ” says Robert Shelton, CEO of Private Access, the tech company that helped create the registry program known as PEER, for Platform for Engaging Everyone Responsibly, that many of the disease-advocacy organizations use.

Having access to such detailed information allows researchers to design different kinds of studies than they are able to conduct using anonymous data collected for other purposes, as many rely on now. The registries also give researchers an easy way to find patients willing to participate in clinical trials.
In the Patient-Centered Outcomes Research Institute-funded projects, patients also have also a major voice in the research topics themselves, so they can seek answers to questions such as which drugs had the fewest side effects, which studies funded by drug companies seldom tackle.

Private industry has seized on the same idea. At PatientsLikeMe, a for-profit organization, patients can also share their health data for research and connect with others battling the same conditions. The company de-identifies the data and sells it to partners, including drug companies. To date, it says, some 350,000 members have contributed 28 million data points on more than 2,500 conditions.

Some researchers are also using apps to recruit patients for clinical trials—and getting surprising responses.
In March, when Apple released five apps for use with its ResearchKit, an open-source software framework designed to help researchers with discoveries, 11,000 iPhone users signed up to participate in one Stanford study measuring heart health in the first day—more than most studies amass in a year, researchers said.
Source : wsj


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