Empowering Health Care Consumers

Project Title

Sharing is Caring: Expanding Patient and Caregiver Access to Health Information in the Age of HIPAA

Grant Amount


Priority Area

Empowering Health Care Consumers

Date Awarded

April 12, 2016








At its core, The Health Insurance Portability and Accountability Act of 1996 (HIPAA) is a consumer protection law. HIPAA provides patients and approved caregivers the right to access health records from providers and health insurance plans while also protecting this information from unauthorized disclosure.

It permits providers to share a patient’s health information and status with the patient’s spouse, family members, friends, or others identified and approved by the patient. However, misunderstanding and misapplication of the law can make it difficult for patients and their caregivers to access their own health information. This has led to the unintended consequence of limiting access to the information HIPAA is designed to make attainable, often to the detriment of patients and their caregivers. In 2016, NYHealth awarded Research Foundation of City of New York, for the Brookdale Center for Healthy Aging at Hunter College (Brookdale), a grant to explore obstacles in HIPAA that are preventing patients and their caregivers from accessing critical health information.

Under this planning grant, Brookdale examined what is happening on the ground in New York that is leading to problems with health information access. Specifically, Brookdale laid the groundwork for an evidence-based solution, the results of which will inform an action plan for the problem. Key partners agreed to collaborate with Brookdale to develop potential interventions and assisted in the project. Major activities included interviews with health care providers and administrators regarding HIPAA rules, a documentation review, and attendance at HIPAA trainings. Brookdale analyzed its findings and developed an action plan to consider possible solutions.