National Partnership for Women & Families

Leading Patient Advocates Release New Online Tool Designed to Help Patients Access, Use Their Health Information

With New Web Content, GetMyHealthData Aims to Simplify Complex Federal Guidance for Health Care Providers as Well as Patients
WASHINGTON, D.C. — March 6, 2018 —

A dynamic, powerful online tool, released today, reorganizes guidance from the Office for Civil Rights (OCR) to help health care providers and administrators understand and respond to requests for health information from patients and family caregivers. The new tool was produced by GetMyHealthData, a program of the National Partnership for Women & Families. It is an interactive version of OCR’s guidance on individuals’ right to access their health information under the Health Insurance Portability and Accountability Act (HIPAA).

The HIPAA Individual Right of Access details how patients and authorized caregivers can see and get a copy of their medical records and other health information, including their right to direct information to designated third parties, such as smartphone applications (apps). GetMyHealthData’s online tool breaks down the guidance by content area and includes short quizzes to help readers process and retain the information.

“With large companies like Apple moving to offer health data management tools on smartphones, it is increasingly important that consumers understand their rights when it comes to their health information,” said Debra L. Ness, president of the National Partnership. “Health care providers and administrators are the gatekeepers for this information, and user-friendly tools help them respond to information requests in a timely and patient-centered way. We’re confident we can help by offering a new way to access OCR’s important guidance on GetMyHealthData.org.”

The interactive guide clarifies many misunderstandings about HIPAA that create challenges for individuals trying to request or receive their health information, as previously documented by GetMyHealthData. These include:

  • Establishing that if a patient requests a particular electronic format, electronic copies must be provided as long as the health care provider is able to readily produce a copy in that format;
  • Clarifying that consumers can ask that their data be sent to “third parties,” including mobile health applications (apps), family members and researchers;
  • Distinguishing an “individual right of access request” from a “HIPAA authorization” and explaining how they impact a patient’s ability to send data to a third party; and
  • Explaining the limited fees that can be charged to individuals for a copy of their health information.

“Through GetMyHealthData, we’ve heard over and over that both patients and providers struggle to understand individuals’ rights to see and use their health data. We thought a useful way to address this challenge was by creating an interactive online tool that maintains the legal details in OCR’s rule, but organizes it in a way that helps people find what they need,” said Erin Mackay, GetMyHealthData director. “With this and other new resources for providers, GetMyHealthData is raising awareness about the critical role health information technology plays in helping patients and family caregivers more fully engage in their health and health care.”

To learn more about the project and see other provider resources, visit GetMyHealthData.org.

Contact

Lauren Sogor (202) 986-2600 lsogor@nationalpartnership.org

The National Partnership for Women & Families is a nonprofit, nonpartisan advocacy group dedicated to promoting fairness in the workplace, access to quality health care and policies that help women and men meet the dual demands of work and family. More information is available at www.NationalPartnership.org.

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