Making Electronic Health Records Consumer-Friendly

Almost three-quarters of Americans surveyed in a study sponsored by the health care-oriented non-profit Markle Foundation say they favor the establishment of a nationwide electronic information exchange that would allow a patient’s health information to be shared with authorized individuals via the Internet.

However, ensuring patient privacy and control over their records is perceived as essential. More than nine out of 10 people surveyed want to ensure that their records are completely secure and only accessible to those authorized. And three out of four Americans say a top priority is making sure their records could be shared only after they provide explicit permission. More than two-thirds are concerned that their employer never has access to their electronic medical records.

“Americans use digital information technology to manage their finances, pay bills, book flights, and customize the music they listen to,” noted Zoë Baird, president of the Markle Foundation. “And our research shows they now want to use health information technology to get the best care possible for themselves and be better able to manage their own health,”

Most Americans believe that electronic medical records will improve their health care. Four out of five people surveyed believe that if physicians kept electronic medical records on their patients, health care quality would improve and medical errors would be reduced, because authorized doctors would be able to retrieve a patient’s medical history in a matter of seconds. An equal number believe that the ability of researchers to review millions of records anonymously to determine best treatment practices would help all doctors improve the quality of medical care.

The survey results and seven basic consumer and patient principles to guide the implementation of health IT will be presented at the first national event, the Personal Health Records Conference, to focus on the needs and concerns of consumers in the field of health IT.

Sponsored by the Markle Foundation, the Robert Wood Johnson Foundation, and the Agency for Healthcare Research and Quality, the conference will focus on advances in personal health technology and the creation of a health information environment in which consumers can use IT to participate more fully in managing their health and health care.

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The newly released consumer and patient principles to guide the development of online health information exchange were developed by the Personal Health Technology Council, a group of 44 consumer and privacy advocates, medical professionals, informatics experts, payers, technologists, federal policymakers, bio-ethicists and researchers.

The seven patient and consumer principles are:

1. Individuals should be able to access their health and medical data conveniently and affordably.

2. Individuals should be able to authorize when and with whom their health data are shared. Individuals should be able to refuse to make their health data available for sharing by opting out of nationwide information exchange.

3. Individuals should be able to designate someone else, such as a loved one, to have access to and exercise control over how their records are shared.

4. Individuals should receive easily understood information about all the ways that their health data may be used or shared.

5. Individuals should be able to review which entities have had access to their personal health data.

6. Electronic health data exchanges must protect the integrity, security, privacy, and confidentiality of an individual’s information.

7. Independent bodies, accountable to the public, should oversee local and nationwide electronic health data exchanges. No single stakeholder group should dominate these oversight bodies, and consumer representatives selected by their peers should participate as full voting members.

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