Guidance and rules for navigating data

In the absence of federal regulations Specifically governing the collection and use of patient-generated health data, providers tend to rely on more general rules and guidelines for handling health information.

The Health Insurance Portability and Accountability Act, which became law more than a quarter of a century ago, limits the power of service providers to share patient data with other organizations and guarantees patients access to their own information upon request.

The Treatment in the 21st Century Act of 2016 requires healthcare systems to provide patients with full online access to their data upon request, including clinical records in their electronic health records.

But state laws with stricter rules for managing, storing and transferring medical data complicate matters, said Aaron Miri, senior vice president and chief digital and information technology officer for Baptist Health in Jacksonville, Florida. Miri is co-chair of the Health Information Technology Advisory Committee of the Department of Health and Human Services.

What’s more, many companies that sell consumer health information tools, including wearables, are not subject to the HIPAA rules that traditional health information technology providers must follow, Miri said.

Inconsistent regulations and a lack of comprehensive privacy and security rules are hurdles for healthcare systems trying to incorporate patient-generated medical data into clinical operations, he said.

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Some healthcare system and software vendors are using the Fast Healthcare Interoperability Resources standard to inform how patient-created health data sources such as scales, monitors and fitness trackers are connected to clinical workflows and eHealth, he said. cards.

Health Level Seven International, a standards development organization, created FHIR to harmonize data formats and application programming interfaces for information exchange between systems.

In 2015, the HHS Office of the National Health Information Technology Coordinator initiated a project to identify gaps, best practices, and opportunities for progress in the collection and use of patient health data in health care and research. The agency also develops a policy on data collected by patients. New rules on that front could make a difference, Miri said.