Who Owns Your Personal Health Data?

The team at the California Healthcare Foundation have come up with another interesting report.

http://www.chcf.org/topics/view.cfm?itemID=133577

Whose Data Is It Anyway? Expanding Consumer Control over Personal Health Information

Manatt Health Solutions

February 2008

As adoption of health information technology and the ability to exchange personal health information advance, so must the legal foundation that facilitates consumers’ access to, and control and use of, such data for their own and society’s benefit. Early technological advances offer a crucial window of opportunity to design legal parameters for appropriate consumer access and control, regardless of the information’s source or how it is used.

This policy brief explores the technological and legal landscape governing personal health information, as well as important issues that must be addressed if consumers are to have new, meaningful rights to the electronic records they entrust to an information custodian serving on their behalf. Challenges include defining "personal health information custodian" as an entity; determining the obligations of custodians, providers, and payers in an updated legal framework; providing economic incentives for clinicians to acquire the capability to electronically convey personal health information to consumers; and enforcement of applicable new laws.

The authors conclude that a modernized legal structure is necessary to ensure that consumers can maintain control over their health information. Such laws have the potential both to clearly define patients' rights and increase the level of consumer engagement in health care.

The complete issue brief is available under Document Downloads below.

Document Downloads

Whose Data Is It Anyway? Expanding Consumer Control over Personal Health Information (539K - PDF).

The Conclusion of this interesting document reads – in full:

“As adoption of health information technology and the ability to exchange personal health information advance, so should the legal foundation that facilitates access to and control of such information for consumer’s benefit. Early technological advances offer a window of opportunity to design legal parameters for appropriate consumer access and control, regardless of the information’s source or how it is used.

As a minimum new laws should give consumers an affirmative right to authorise the transmission of any standardised, electronic health information to a custodian of their choice, and ensure the custodians use such information in a manner directed by consumers. These laws would have a significant potential to engage patients in their health care by clearly defining their rights (thus winning their trust) and fostering models of information custodianship that support their needs.”

It is my view this is a real sleeper of an issue. It is going to be vital to recognise that a patient has a right to assemble their health information in a single place so they can control it and make it available to their carers (in whatever form they choose) whenever they want.

Right now, just as in the US, it does not seem this emerging need has been recognised – and I believe it should be sooner rather than later.

David.