The program is affiliated with the John F. Keane & Family Professorship in Medicine at Harvard Medical School; the holder of this title is recognized as a distinguished as a leader in advancing patient and clinician engagement and health care transparency.
U.S. citizens have the legal right to request and receive copies of their medical records, including clinical notes, through the Health Insurance Portability and Accountability Act of 1996 (HIPAA).
[2] Sharing clinical notes with patients was made easier after the widespread adoption of electronic health records in the United States and around the world.
In 2010, Beth Israel Deaconess Medical Center in Boston, Geisinger Health System in Pennsylvania, and Seattle's Harborview Medical Center launched an exploratory study involving 105 primary care doctors inviting 20,000 of their patients to read their clinical notes via secure online patient portals.
This study has been replicated at numerous sites in the U.S., including at Kaiser Permanente Northwest, Cedars-Sinai, and at the U.S. Department of Veterans’ Affairs, and led to the adoption of sharing clinical notes in North America.
A study by the Geisinger Center for Health Research found patients offered access to notes were more likely to fill their prescriptions for blood pressure medication.
When caregivers are able to review notes (e.g., through a healthcare proxy) they report being able to better manage the health needs of people in their care, including scheduling visits, reconciling medication lists, and following through on recommendations.
"[25] Not as many health organizations have chosen to share mental notes due to concerns patients could become confused, anxious, or offended by what is written.
"[32] In 2018, a qualitative study was conducted of patients in treatment for metastatic or advanced cancer who read their clinical notes at Duke Health.
Interviews with these patients revealed most thought reading notes improved their care experiences, although a small subset experienced increased distress.
[33] Qualitative research of oncology open notes in Sweden challenged assumptions about how and when patients receive information about their cancer care.
"[34] When solicited through an online reporting tool, one-quarter of patients and families receiving care at three different health systems sharing clinical notes in the United States identified potential medical documentation errors, half of which were considered "important" by the patients/families and clinicians.
More than half of doctors participating in a study[14] felt sharing notes led to improved patient satisfaction and trust.
The study showed that 74% held positive views about note sharing, and most found the practice did not affect their workflow and would recommend it to colleagues at other institutions.
Patient suggestions included: In one study of post open notes-implementation, 15-20% of clinicians reported making modest changes in their approach to medical records.
Sharing notes with patients represents a culture change for clinical practice and may create anxiety or apprehension among clinicians.
[48] An accompanying editorial hypothesized the concept could result in an improved “shared decision making process… thereby (encouraging patients to) follow their physicians’ advice,” and may save health systems billions of dollars on “medication nonadherence.”[49] The OpenNotes organization received support from the Commonwealth Fund to further develop and research OurNotes.
As a result of the COVID-19 pandemic, Beth Israel Deaconess Medical Center's pilot of OurNotes expanded to telemedicine delivery in mid-March 2020.
[54] In 2013, the U.S. Department of Veteran's Affairs (VHA) introduced an enhanced version of its Blue Button personal health record, including access to clinical notes.
The 21st Century Cures Act, passed by the U.S. Congress in 2016, requires patients be offered access to all the health information in their electronic medical records without charge by the provider, including the notes their clinicians write.