National Partnership for Women & Families, Inc.
Empowering Health Care Consumers
November 2016 - October 2018
The health care system can be unresponsive to people’s needs and preferences.
In the clinical setting, patients and caregivers are sometimes denied access to the health information needed to have a voice in their care. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) was designed to ease access to health information for patients and their network of caregivers, as well as to protect them from inappropriate disclosure of records. HIPAA also permits health care providers to share a patient’s health information and status with the patient’s spouse, family members, or other people identified by the patient, as long as the patient does not object. However, misunderstanding and misapplication of the law and its requirements often have the opposite effect, making it more difficult for patients to access information they need to be fully engaged in their health and care and for caregivers to aid patients in need. HIPAA is often invoked when denying information, even when the right to access is legitimate. Patients or their family members seeking health information or records are often denied access because of misunderstandings over HIPAA privacy regulations; charged exorbitant, illegal fees; or forced to navigate impenetrable systems. They often do not know their rights regarding their own health information.
In 2016, NYSHealth awarded National Partnership for Women Families (NPWF) a grant to further the work of the GetMyHealthData campaign, which sought to document people’s experiences requesting their medical records. NPWF was one of a cohort of grantees selected to fund ambitious, large-scale projects and studies that help to arm consumers with tools and resources to inform their decision-making.