Today, 12 leading associations and non-profits representing patients, clinicians, hospitals, health plans, and technology companies released a white paper highlighting their shared commitment to supporting patients in accessing and using their health information.

The white paper builds on the Health IT Leadership Roundtable: Future of Interoperability and Secure Consumer Access to Healthcare Data, which was facilitated by Sirona Strategies health care consultancy in January 2020. It highlights opportunities and challenges to achieving interoperability, and includes recommendations related to education and engagement, privacy and security, and data sharing.

“Our organizations share the same goal: making sure that patients have meaningful access to health information they can actually use to make informed decisions about their care,” said Justine Handelman, Senior Vice President at the Blue Cross Blue Shield Association. “We are committed to achieving this goal while educating patients on important topics like privacy and security.”

Opportunities identified include giving patients easy, convenient access to data through their technology of choice, and seamless information exchange that enables clinicians and patients to make more informed decisions. Challenges include inadequate privacy and security protections for information shared with technologies such as mobile apps; lack of consumer and clinician understanding and education about their health information rights and responsibilities; and a lack of developed, tested, and widely implemented standards.

“Recent regulations from the Centers for Medicare & Medicaid Services and the Office of the National Coordinator for Health IT create exciting new possibilities for patients. We will continue to advocate so that patients do not have to choose between accessing their information through their technology of choice and protecting their privacy and security. Patients want both,” said Erin Mackay, Associate Director of Health Programs at the National Partnership for Women & Families.

“The patient-clinician relationship is paramount. New requirements must be implemented in a way that strengthens patients’ trust in their clinicians and the health care system while not overly burdening either,” said Steven Waldren, Vice President and Chief Medical Informatics Officer, American Academy of Family Physicians.

The purpose of the Health IT Leadership Roundtable: Future of Interoperability and Secure Consumer Access to Health Care Data was to provide an opportunity for a diverse set of patients, policymakers and organizations to find common ground in identifying patient access and interoperability challenges, and to discuss potential solutions to those challenges. The Roundtable was hosted by the American Academy of Family Physicians, American College of Physicians, American Health Information Management Association, American Heart Association, American Hospital Association, American Medical Informatics Association, Blue Cross Blue Shield Association, College of Healthcare Information Management Executives, Consumer Technology Association, Federation of American Hospitals, National Partnership for Women & Families, and Premier Healthcare Alliance.  

More information about the white paper and the event can be found here.