OpenNotes

OpenNotes is a research initiative and international movement located at Beth Israel Deaconess Medical Center.

Scholarship

OpenNotes is a research component of the Research Section of the Division of General Medicine at Beth Israel Deaconess Medical Center in Boston, MA. 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.

Open notes (the concept)

In medicine and health care, clinical notes are detailed documentation about a medical professional's encounter with a patient. Notes become part of a person's medical record within a given institution. Notes are written by the treating medical provider, but could also be drafted by a medical scribe or medical student and later signed by a board-certified physician.
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. The process of making a formal medical records request through a hospital can take time and effort, and people must pay for the materials the medical records are delivered on.
An "open note" is when doctors, nurses other medical professionals share clinical visit notes with patients. Sharing clinical notes with patients was made easier after the widespread adoption of electronic health records in the United States and around the world.
As of April 5, 2021, U.S. patients were granted near immediate access to most all information in their electronic medical records, including progress notes; when notes are shared with patients, they become "open notes."

Research about open visit notes ("open notes")

Original open notes demonstration project

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. The study, funded by the Robert Wood Johnson Foundation, examined the effects of sharing notes on both patients and doctors. Results of this study were published in the Annals of Internal Medicine in 2012 in the paper, "Inviting Patients to Read Their Doctors' Notes: A Quasi-Experimental Study and a Look Ahead." The paper showed that doctors reported little change in workload and clinician fears were unfounded. Patients overwhelmingly approved of note sharing as a practice; few were worried or confused by their notes. Instead, patients reported that reading notes helped them feel more in control of their health and health care.
In response, several health systems made plans to adopt open notes. 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.

Primary care

Research indicates 25% of patients who contact doctors as a result of reading their notes report possible errors. In a 2012 study, up to 78% of patients reported that reading doctor's notes helped them take their medications as prescribed. 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. A majority of patients reported that reviewing notes made them feel the same or better about their doctor. Research shows that sharing notes with patients can lead to improved communication, collaborative decision-making, and strengthened relationships. 77–87% of patients in one study said that accessing their notes made them feel more in control of their health care.

Caregivers / care partners

In a study, caregivers reported benefits from note sharing similar to those reported by patients. When caregivers are able to review notes 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.

Pediatrics and adolescents

Starting at age 13, Boston Children's Hospital offers parents and patients separate portal accounts so that adolescent children are able to access their open notes. A small study of adolescents and young adults with chronic pediatric gastrointestinal/liver disease show that in general, AYA's are satisfied with their clinical notes, and all but 1 of the study participants had adequate functional health literacy.

Vulnerable populations

Lower income patients, African Americans and other racial minorities, and those with less than high school education are more likely than white patients or those with higher incomes to report improved trust in their clinician and health care organization when access to notes is offered. When patients read notes, they report benefits, including feeling more comfortable with and in control of medications, having an increased understanding of side effects, and being more likely to take medications as prescribed.

Mental health

Using notes as an integral component of therapy is gaining interest among mental health professionals and patients. Mental health notes are usually written by psychologists, psychiatrists, and social workers. A report from a small sample of Veterans Health Administration patients reading online mental health notes indicates patient experiences are more positive than negative when reading mental health notes. In a study of psychotherapists' notes shared with patients online at Beth Israel Deaconess Medical Center, results showed, "Nearly all survey respondents agreed that having open therapy notes is a good idea, and 87% wanted it to continue. More than half reported therapy notes were 'very important'... for feeling in control of their care, trusting their providers and taking care of themselves. Two respondents felt offended, and 7 felt judged by something they read in a note."
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. Some have suggested this is a philosophical dilemma that could be addressed by reconsidering assumptions that reading notes is harmful, and instead conceiving the therapy notes as an extension of the clinical encounter.

Oncology

Common concerns clinicians have about sharing oncology notes include: patients receiving "bad news" about their diagnosis before talking with a doctor ; oncologists writing more in a note about prognosis than what they may say to a patient during an in-person visit; and that patients will become anxious as a result of reading the note.
A study published in Cancer Cell in 2020 outlined how cancer patient and oncology clinician views of open notes differed. Example from the article: 98% of cancer patients believed open notes to be a "good idea," while 70% of oncology clinicians felt the same. Another gap: while 44% of clinicians believed cancer patients would be confused by their notes, just 4% of the cancer patients reported feeling confused.
MD Anderson Cancer Center began sharing clinical notes through their online patient portal in 2009, and report that oncology patients experience similar benefits to reading their notes as primary care patients.

"… our active patients have obtained access to their electronic records. As a result, they are more informed about their care plan and diagnostic results and ask smarter, more focused questions. There have been no adverse consequences and generally positive feedback from patients and physicians." - Feeley TW, Shine KI. Access to the Medical Record for Patients and Involved Providers: Transparency Through Electronic Tools. Ann Intern Med. 2011;155:853–854. doi: 10.7326/0003-4819-155-12-201112200-00010

Harborview Medical Center began sharing clinic visit notes in most all outpatient settings in 2014, including in outpatient oncology. In an editorial for the Journal of Oncology Practice, Daniel B. Martin, MD, said, "The clinic visit note will become another tool with which providers communicate with patients… providing all the information a patient can choose to use in an accessible format facilitates better communication between patients and their providers."
In 2017, UCLA and Memorial Sloan Kettering wanted to better understand patient perceptions of open access to radiation oncology notes made available through the online patient portal. The study found all patients reported the notes to be useful; 94-96% of patients self-reported as having an improved understanding of their diagnosis, of treatment side effects, and feeling more reassured about treatment. However, 4-11% of patients noted increased worry and confusion, or now having found information they "regret reading."
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.
Qualitative research of oncology open notes in Sweden challenged assumptions about how and when patients receive information about their cancer care. As part of the study, one patient said, "if we can manage to have all of these cancer diseases and to live with it, then we can handle reading about it." In a survey of oncologists in Sweden, "73% believed that patient access to oncology notes was a good idea" and perceived "patients felt they had more control of their care."

Accuracy of the record, quality and safety

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. The most common potential inaccuracies included how symptoms were described, past medical history, and the list of medications patients were taking.
A survey of 22,889 note-reading patients at 3 U.S. health systems showed that 1 in 5 patients surveyed claimed they could find errors in their visit notes; the most commonly reported errors had to do with diagnoses, history and medications. More than 40% of those who reported finding an error said the error was 'serious.'