Empowering Health Care Consumers

Grantee Name

National Partnership for Women & Families, Inc.

Funding Area

Empowering Health Care Consumers

Publication Date

December 2019

Grant Amount


Grant Date:

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, NYHealth 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.

Outcomes and Lessons Learned

  • Used the barriers identified in the GetMyHealthData campaign, which seeks to document people’s experiences requesting their medical records, to work with New York State hospitals on changing attitudes and practices to make patient and caregiver access to health records easy, automated, and routine.
  • Collected and shared stories of patients who have tried to use or access their medical information.
  • Cultivated relationships with hospitals that agreed to serve as GetMyHeatlthData data exemplars for better information sharing with patients so they can more easily access their own health information.
  • Developed and distributed additional resources, guides, and FAQs to help patients, caregivers, and providers improve information access and sharing, including those designed to increase awareness and understanding of HIPAA and an individual’s right of access.

Identifying hospitals to be data exemplars proved to be a challenge. NPWF found that the most successful relationships came from connecting with individuals within the institutions who were passionate about and personally committed to improving patient data access. These individuals—often already overstretched and under-resourced in their professional positions—were eager for assistance. It was more difficult for NPWF to build formal relationships with hospital systems. Some of the barriers to hospital participation included a lack of:

  • Financial funding from their organizations to supplement NPWF’s technical assistance and support;
  • Alignment with organizational priorities and/or strategic plans for electronic health records;
  • Capacity for or interest in external partnerships; and/or
  • Certainty around relevant regulatory requirements.

Given difficulties in the recruitment process and the slow pace of exemplar projects, NPWF leveraged existing networks and relationships to spread ideas and resources to New York providers rather than forming a separate learning collaborative for hospitals under this grant.

NPWF was successful in providing valuable technical assistance to two of NYHealth’s OpenNotes grantees, NYC Health + Hospitals and University of Rochester Medical Center, helping them implement and evaluate their projects. From its work with these grantees, NPWF developed actionable recommendations and resources on OpenNotes best practices for New York State health providers. NPWF promoted these resources with health care providers, thought leaders, and policymakers at a range of meetings and events, including the 2018 Healthcare Information and Management Systems Society’s Global Health Conference and with the CARIN Alliance. NPWF also built relationships with and presented at the Healthcare Association of New York State and the Greater New York Hospital Association, engaging them in discussions with hospitals across the State.

Co-Funding and Additional Funds Leveraged: N/A