On April 5, 2021, a new federal rule will require U.S. healthcare providers to give patients access to all the health information in their electronic medical records without charge. This new information sharing rule from the 21st Century Cures Act of 2016 mandates rapid, full access to test results, medication lists, referral information, and clinical notes in electronic formats, on request.

For some clinicians, these new requirements may come as a shock. To patient groups, however, it is the culmination of 25 years of advocacy and relationship building with clinicians, researchers, and policy makers. Back in 1996, the Health Insurance Portability and Accountability Act (HIPAA) gave patients the legal right to request and receive copies of their records, but this takes time, effort, and money. The new information sharing rule will enable anyone receiving health care in the U.S. timely access to both ambulatory and inpatient care records through secure online portals.

The new legislation also stipulates that people should be able to download their data to third-party digital applications (apps) and aggregate all their health records into their digital platform of choice by October 2022, allowing people to share health information with anyone involved in their care.  Patients have much to gain from the new rule on information sharing.

• Studies conducted by OpenNotes at Beth Israel Deaconess Medical Center show that  patients who read what is written about them by clinicians feel more involved in and knowledgeable about their care, feel better prepared for visits, and report increased trust in their clinicians, and being more likely to follow their advice.
• Some patients also report doing a better job taking their medications as a result of reading their notes.
• Patients  identifying as Black, speaking a primary language other than English, or those with less formal education are more likely to report the benefits of having access to their notes.
• Informal caregivers  are particularly likely to report benefits when they are able to access the notes of the person for whom they provide care.
• A majority of clinicians (74%) with substantial experience sharing notes with patients report that it is a good idea and that they would recommend the practice to other clinicians (61%).

U.S. health care organizations may choose to comply with the rule in a way that helps ensure patients know about their enhanced right to access and use their health information for empowerment and engagement, or they may simply keep quiet about it and hope patients don’t notice their new rights. Choosing to keep quiet would be a mistake.

Full sharing and transparency of personal health information should strengthen patient-clinician communication, raise health literacy, promote self-management, enhance teamwork, and increase trust. Patients’ voices must now be put at the center of discussions and debates about information and data sharing in healthcare to ensure that all reap the benefits of the digital age. To find out more, visit https://www.opennotes.org/