One major issue facing private and public Health Information Exchanges (HIE) is how to ensure patients privacy preferences are respected by obtaining their consent before data is shared.
Today I met with a multi-disciplinary team of attorneys, vendor experts, and IT leaders to discuss BIDMC’s approach to private HIE consent.
After two hours of discussion, here’s what we agreed upon:
Patients and families should be able to control the flow of their data among institutions. The ability for the patient to chose what flows where for what purpose is “meaningful consent.”
To achieve “meaningful consent” we will ask all the patients of our 1800 BIDMC associated ambulatory clinicians to opt in for data sharing among the clinicians coordinating their care.
Patients may revoke this consent at any time.
Consent for patients under 18 years old and not emancipated will be sought from their parents. Upon turning 18, the patients themselves will select their consent preferences.
