Freeing patients’ data to move with them remains one of the biggest obstacles in the healthcare information revolution, writes Commonwealth Fund President David Blumenthal in an article in The Wall Street Journal.
Doctors and hospitals have legitimate reasons to be unwilling to share data, writes Blumenthal, the former National Coordinator for Health IT. After all, if a patient’s records can go elsewhere, the patient’s business can, too.
But questions remain about who actually owns that data. One solution, he says, would be to put patients in charge of their own data so they can decide who has access to it and when. Patients could designate particular doctors or facilities that should have access, as well as certain family members or caretakers. They could decide whether to provide it to researchers or public health authorities.
Several things would be required to make that a reality, Blumenthal writes. For starters, the government would need to more aggressively enforce HIPAA’s information-sharing provisions.
What's more, he says, some patients might need third-party data stewards, who, for a fee, could help them manage their data. This, in turn, might require some public regulation to ensure such stewards could be trusted to effectively take on this sensitive and complex role.
Additionally, Blumenthal says, technical capabilities must improve in order for data stewards to effectively access the electronic-data repositories of health-care providers.
To learn more:
- read the article