Consent system puts patients in charge of their health data

A few physician practices are scheduled to test a federally authorized system that would make it easier for patients to decide how, when and with whom to share their health data -- and easier for doctors to know their patients' choices.

The Health and Human Services Office of the National Coordinator for Health Information Technology has given a $1.2 million contract to a private company to develop and pilot a system for patients to learn their options for consenting to the use of their data and recording their choices electronically.

The system will be piloted at four physician offices that are part of western New York's health information exchange, HEALTHeLINK. It's not yet known how the system will be presented to patients or how physicians will be involved.

But the Health Information Technology Committee, which advises HHS on federal health IT policy issues, made recommendations for the project. It noted that the person with "the treating relationship with the patient" should be responsible for educating the patient about how his or her information will be shared and used, and for obtaining and tracking the patient's choices.

"The relationship between the patient and his or her health care provider is the foundation for trust in health information exchange," the committee report authors wrote.

As part of the pilot program, patients will provide input and feedback about the information they would want or need before deciding how their data is used. The pilot, called e-consent, is scheduled to last about a year and a half.

The ONC said little research exists on whether patients are adequately informed about how their data is used and shared. But other research has found that the informed consent process for medical procedures is inadequate because of the lack of educational value in the documents used. The ONC said it hopes the pilot will help ensure that patients are "knowledgeable participants in decisions about the sharing of their electronic health information in a clinical environment."

The American Medical Association plans to examine the issue of data ownership. Its House of Delegates adopted policy in June calling for a closer look at the issue and model legislation that details who owns the clinical data and who can access it and when. One issue the policy says the model legislation should address is prohibiting payer access to identifiable patient data. Informed consent would be a possible exception.

The AMA reaffirmed policy in 2009 that says disclosure of patient information to a third party should occur only with the patient's consent.

"Conflicts between a patient's right to privacy and a third party's need to know should be resolved in favor of patient privacy, except where that would result in serious health hazard or harm to the patient or others," the policy states.