Privacy concerns remain barrier to health information exchanges

By Diana Manos
12:00 AM

WASHINGTON - A new report on health information exchange says state public-private health information exchange organizations are making progress in some areas, but the question of privacy remains a hurdle.

The report was released Monday by the American Health Information Management Association and the Office of the National Coordinator for Health Information Technology at a joint conference.

ONC chief Robert Kolodner, MD, said one barrier to HIE growth is the lack of trust across all stakeholders. Governance must include all stakeholders or “solutions are sub-optimized,” he said. Now is “a pivotal time” for building sustainable health information exchange, he added.

Preliminary findings in the report issued by AHIMA’s Foundation of Research and Education
said goals for improving quality threaten HIE development by creating competing demands among stakeholders.

There are separate and largely uncoordinated patient safety initiatives, the report said. There are also conflicts between value exchanges, data-reporting entities and “confusing, duplicative, and otherwise misaligned organizational purposes.”

“On one hand, state-level HIEs report being preoccupied with efforts to ensure implementation and sustainability of core HIE services,” authors of the report said. “On the other hand, they also relate concerns about moving into secondary use of data -- such as that for quality and performance monitoring -- without sufficient foundation and support.”

According to the report, state-level HIE efforts have taken hold but more direction will be needed to ultimately weave together a network of networks.

According to Kolodner, any nationwide interoperable health information exchange should include privacy as a foundation, along with standards in healthcare IT products and IT adoption.

Kolodner recognized that barriers to adoption include misalignment of incentives, doubts in small physician practices about the quality of electronic health records, lack of interoperability, required workflow changes and lack of an adequately skilled national workforce.

ONC is working to provide solutions that include the certification of products to ease doubts.

By summer 2008 ONC will have orchestrated the development of 30 standards with current certification of  90 electronic health record products, comprising more than 40 percent of the market, Kolodner said.

Privacy activist Deborah Peel, MD, founder of Patient Privacy Rights said she is not surprised that regional health information exchange isn’t working. The RHIO business model requires that hospitals, insurers and employers exchange patient health information without consent from patients. “None of these corporations trust the others with our personal health records that they imagine belong to them,” Peel said. “The only way electronic health records systems will ever work is if the only real stakeholders -- American patients -- control access to our sensitive medical records. We are the only ones who know who we want to see our records, and when and where the records should go.”

AHIMA said it will continue to gather research on HIE progress over the next months with an emphasis on stakeholder input.

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