February 14, 2008
Whose Data Is It Anyway?
A special report from the California Healtcare Foundation discusses data ownership. The changing landscape of health information technology and the ability to exchange personal health information requires that the legal foundation that facilitates consumers’ access to, and control and use of, such data for their own and society’s benefit must also change.
"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."
Here is the report (pdf)
Whose Data Is It Anyway? Expanding Consumer Control over Personal Health Information (539K)