Most Americans Want Electronic Health Data, But Fear For Privacy - InformationWeek
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Most Americans Want Electronic Health Data, But Fear For Privacy

Nearly two-thirds -- 65% -- of U.S. consumers want personal electronic health records, but 80% of them have concerns about the misuse and security of their information.

While a majority of American consumers say they want electronic access to their medical information and believe digitized records could improve health care and cut costs, they fear for the security and the privacy of that personal data.

Nearly two-thirds -- 65% -- of U.S. consumers want personal electronic health records, but 80% of them have concerns about the misuse and security of their information, according to new survey of 1,003 Americans, commissioned by the Markle Foundation and conducted by polling firms Lake Research Partners and American ViewPoint.

Of those surveyed, 80% say they are "very concerned" about identity theft and fraud related to electronic personal medical data and 77% are "very concerned" about their medical data being used for marketing purposes.

Seventy-five percent also say they think the government should have a role in establishing rules to protect privacy and confidentiality of online health data.

Of those surveyed, 56% say they are concerned about their employers getting access to their personal health data.

In fact, the Markle survey findings comes right on the heels of the formal launch this week of Omnimedix Institute, a non-profit organization launched by Intel, Wal-Mart, B.P America, Applied Materials and Pitney Bowes, which is developing Dossia, a Web-based framework providing employees with portable electronic personal health records.

Omnimedix officials say Dossia will have "stringent" privacy and security policies and procedures, and that individuals will be able to "opt in" to the system and decide what information can be shared and with whom. Omimedix founding members say that by providing employees with electronic tools, like personal health records, workers can better manage their medical and wellness needs, ultimately helping employers get a better handle on soaring health care benefits costs.

Yet, the jury is still out on whether employer-driven movements like Omnimedix will gain enough public trust and traction to promote wider-spread adoption of electronic medical records.

"Previous [Markle] surveys have found that most consumers want their health care providers to host or sponsor these systems," says David Lansky, senior director of health programs at Markle, a non-profit, non-partisan organization focused on accelerating the use of IT to address critical public needs in national security and health care.

Also, it's uncertain the level of collaboration that will grow between employer-sponsor efforts like Omnimedix and the sources of the most comprehensive patient data -- health care providers themselves. "Health care is very fragmented, information comes from a lot of different places," says Lansky.

Trust, privacy, and security are key issues in collaborations involving data sharing of patient medical information, say health care CIOs.

"I'm a strong believer that patients should be stewards of their own data," says John Halamka, CIO at Harvard Medical School and also CIO of CareGroup Health System, which operates several Boston area hospitals. "If trust relationships are established, privacy protections are in place and interoperability standards are used, then Harvard-associated hospitals would be likely to participate" in employer-sponsored efforts like Dossia, he says.

Lansky says Markle was not involved with the launch of Omnimedix. However, Omnimedix officials say Dossia will be based on the Connecting for Health Common Framework, a set of design and policy standards established by a collaboration of industry stakeholders, including consumer advocacy organizations, physician groups, insurers, technologists and privacy watchdogs. Connecting for Health is a group within Markle.

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