WASHINGTON – Members of the American Health Information Community Consumer Empowerment Workgroup determined on July 11 that they would continue to explore the policy issues surrounding the secondary use of healthcare data.

According to Karen Bell, MD, director of the Department of Health and Human Services Office of IT Adoption, “There’s no question that the secondary use of data is a big one.”

Bell said now is the time to explore the issue while adoption of electronic health records is still low and personal health records currently do not contain much clinical information. “We have a unique opportunity to work on the issue before it becomes front and center in consumers' minds,” Bell said.

Bell said the workgroup will delve deeply into the issue. “It’s not one big data steward in the sky,” Bell said. “I think we are recognizing that we’re not even close to finding all the answers on this.”

The workgroup heard testimony on secondary uses of data from Charles Safran, MD, Harvard Medical School, who defined secondary use of data as that used for non-direct care, including analysis, quality, research, payment, provider certification, marketing and commercial activities. “We believe there is tremendous value in secondary use of health information,” Safran said. “It’s so important to national health, but we need to have better guidelines on how this information should flow.”

Safran, who has been part of several panels on the issue and who has written white papers on the subject, said the secondary use of data is widespread – “more than we thought.” Issues of privacy dominate public trust and the technological capabilities clearly outpace policies and procedures to date, Safran said.

According to Safran, policy has so far “ignored the 800 pound gorilla in the room,” which is the selling of healthcare data as part of commercial gain. “The public is woefully unaware to what is happening to their data,” Safran said. National leadership on this issue is critical, he added.

Jon White, Health IT director at the Agency for Healthcare Research and Quality (AHRQ), said collection of data has been invaluable. “You can’t improve what you can’t measure,” White said. “Healthcare IT is a way to significantly improve care.”

AHRQ recently released a request for information on the concept of national stewardship over the secondary use of data. The deadline for comments is July 27.  AHRQ will use the information gathered from comments, but has no plans to issue a follow-up request for proposals, White said.  

“Where all this goes, I’m not sure yet, to be perfectly honest,” White said. “There are great ideas here, but they need to be thought through. We are looking forward to a robust discussion [on the secondary use of data] as we move forward.”

Nancy Davenport-Ennis, co-chair of the workgroup and executive director of the National Patient Advocate Foundation said that the initial charge of the group was to determine who owns the data. “We shouldn’t get away from that question of who owns the data,” she said. “The consumer will ultimately come back to the question, is this my data?”

Davenport-Ennis said the group should explore how to regulate a violation of stewardship over the data, how to protect consumers and how to provide incentives to consumers who make lifestyle changes to improve their health based on information gained from the data.