Support the Proposed Federal Rule to Expand the Rights of Patients to Access Their Test Results

Tim O'Reilly has been leading an initiative to improve patients’ rights to medical records.  O’Reilly Media wrote and circulated a sign-on letter voicing support  for a proposed federal rule that expands patients' access to test results. “I’m convinced that there's a wave of innovation coming in healthcare, driven by new kinds of data, new ways of extracting meaning from that data, and new business models that data can enable," Tim says. While much of that data is still unavailable, efforts such as this consensus letter advance the progress of open data in healthcare. The letter asks the federal government to finalize a proposed rule that gives patients those rights.. The sign-up period has now closed, and the letter will be delivered to senior officials in the Administration. Here’s a summary:.

Summary of Letter Supporting the Proposed Federal Rule to Expand the Rights of Patients to Access Their Test Results

Patients need quick, convenient access to their medical records in order to better manage their health. Patients' rights should include direct access to their lab results, just like all their other medical records.

In 2011, HHS put forward a proposed Rule that would give patients the right to get their test results directly from laboratories. Today, due to the interaction of HIPAA (the federal medical privacy law, CLIA (a federal laboratory regulatory law), and state laws, patients can only get direct access to their their test results from labs in a handful of states. The proposed Rule would give patients that right in all 50 states. This consensus letter voices our whole-hearted support for that proposed Rule and encourages the federal government to finalize it promptly.

A 2009 law modernized patient access rights by allowing individuals to get copies of their medical records in electronic format. Unfortunately, however, patients' access rights do not include lab test results. Lab test results are in a uniquely restricted category compared to other health information, which impairs patients' ability to see, save, use, and share their own test results.

Our position. Our reasons for supporting the proposed Rule include:

1. Providing direct and timely access to test results will improve patient care.
2. Preventing patients from accessing their own lab results impedes the successful development of emerging health care technologies, since many innovative and useful tools rely upon the patient's access to their own health data.
3. Many patients need to pass along their results to another provider, yet patients can only deliver what they possess. Time is valuable and having a copy on hand will help patients during medical emergencies.
4. Providing direct access to lab results will decrease health care costs. As Todd Park, the federal Chief Technology Officer, said, "When patients have timely access to their records, they can spot errors and omissions, which improves treatment outcomes and helps them avoid unnecessary procedures."
5. Improving patient engagement is a crucial national priority, and giving patients direct access to lab results will help them actively participate in their care.

Therefore, the proposed Rule should be finalized promptly.

Stay tuned for more information about the proposed federal Rule – and for other advocacy efforts.