Data privacy, control clinch consumer support for e-health records

Consumers broadly support electronic medical records if they have control over their own information and privacy safeguards are in place, according to a public-private organization that has established principles to guide the development of online health information exchanges.

The Personal Health Technology Council, brought together as part of the Markle Foundation's Connecting for Health initiative, includes privacy advocates, physicians, standards groups, IT companies, and federal and state policy-makers.

The principles include individuals' ability to access their health data easily and to authorize when and with whom data is shared. Ensuring patient privacy and control over their records is essential to consumer acceptance of health data exchange, the council said in announcing the principles and a consumer survey about online health records.

'Access and control must be built in from the beginning,' said Carolyn Clancy, director of the Agency for Health Research and Quality in the Health and Human Services Department and member of the council.

The recent experience of lost medical records in the aftermath of Hurricane Katrina illustrated the need for electronic records, Clancy said at a Washington conference on personal health records sponsored by Markle, AHRQ and the Robert Wood Johnson Foundation.

Like finance and travel, consumers want to manage their own health, said Markle Foundation president Zoe Baird.

'People realize that if they or those they love are in an accident or disaster, having their medical records available at a moment's notice through secure, electronic information exchange could mean the difference between life and death,' she said.

Among the other principles, consumers should be able to designate someone else to have access and control over their records, to review who has had access to their personal data and to receive easily understood information about how their data may be used.

Markle found in surveying 800 individuals last month that:
  • 80 percent believe that if physicians kept electronic medical records on their patients, health care quality would improve and medical errors would be reduced

  • 72 percent support the establishment of a nationwide electronic information exchange that would allow health information to be shared with authorized individuals securely over the Internet

  • 81 percent believe that the ability of researchers to review millions of records anonymously to determine best treatment practices would help physicians improve the quality of medical care.

About the Author

Mary Mosquera is a reporter for Federal Computer Week.

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