Strata Rx 2013: Patients willing to donate data for research

BOSTON--Individuals are willing to donate data, but assert that ownership of such data ultimately lies with them, said Kevin Patrick, MD, professor of family and preventive medicine at the University of California, San Diego, at Strata Rx 2013. Researchers also consider such self-reported data as reliable and dependable, he said.

Patrick is principal investigator of the Health Data Exploration Project, which is exploring how to bridge health researchers and individuals who may want to donate their health and medical data.

The enormous amount of data available, which captures nearly all aspects of life, can unlock great research potential. Given the usefulness of data to address health disparities, runaway health costs and the burden of disease, the project is conducting surveys to help researchers navigate the ethical, methodological and scientific issues associated with accessing personal health data, he said.

“The ecosystem of devices, apps and services is rapidly outpacing current methods of consent,” he explained, prompting a need to explore the issue of consent further. The project also is exploring how to handle intellectual property of research findings.

One survey, which encompasses 361 consumers, revealed a willingness to share data, he said. “It’s good news.” Consumers also expressed a willingness to donate data as long as they are used for research and not commercial endeavors.

Overall, consumers felt they should own their own data, and comfort level varied between respondents on privacy expectations. “We need to dig further into these issues of data,” he said.

In another survey conducted by the project, 99 researchers in healthcare, engineering and technology said that publicly available data would be useful for them and their research. They also expressed a willingness to trust self-reported data and said it is as useful as data within registries. “They don’t see barriers. They see the data as useful, high value and trustworthy.”

The project now is in the process of interviewing 21 companies on their principles of opening up data. So far they are finding that companies are open to sharing consumer data but with the caveat that the business model must make sense.

However, Patrick noted that that third-party Institutional Review Boards, in general, don’t feel that “click through licenses”—where consumers consent to sharing their info with one click online— authorize their sharing with other parties.