Strategy 6C: OpenNotes
For a long time, patients have been deliberately excluded from access to the medical records that contain clinical information about their health problems, resulting in an enforced health illiteracy supported by medical professionals. While consumers and some clinicians have encouraged the adoption of transparent health records, skeptics worried that shared notes may offend or confuse patients, erode trust, promote defensive medicine, and create more work for already overburdened clinicians.
In recent years, however, information technology (IT) has brought about dramatic changes, including new avenues for patient care and patient engagement. Electronic medical records are changing how clinicians record, retrieve, and exchange medical information about patients. At the same time, online resource centers and support services are changing how patients learn about their conditions and treatments and manage their own health problems.
On the legal front, the 1996 passage of the federal Health Insurance Portability and Accountability Act (HIPAA) had a pronounced twofold impact: It gave patients the right to review their medical records and to request that corrections and additions be made to the record.1 Since then, the medical chart is no longer the sole purview of clinicians. Yet relatively few patients take advantage of their right. Reasons include a lack of awareness, reluctance to upset clinicians, and obstacles such as technical issues and misplaced security and privacy concerns on the part of care teams.
To address these issues, various health care organizations have come together in an initiative called OpenNotes to encourage doctors, nurses, and other clinicians to provide their patients with real-time, online access to clinical visit notes. OpenNotes originally began in 2010 as a demonstration and evaluation study in Boston, rural Pennsylvania, and Seattle with 105 volunteer primary care physicians (PCPs) and 19,000 patients. Since then, OpenNotes has expanded rapidly across the country.
In the original study, a secure email message automatically notified patients when a note was signed and invited them to review their doctors' notes after each visit and again before their next visit. These patients were registered portal users who had already taken advantage of online access to lab test results. With OpenNotes, they had access to their medical record notes for the first time.
Specifically, patients could read what their physicians recorded, including:
- Findings on physical examination
- Interpretations of these findings
- Conclusions about a patient's current condition
- Thoughts about future evaluation of the patient's condition
- Prognosis for the patient
This transformative change in practice represents a major step in the movement toward greater transparency and patient engagement in health care.2 Advocates believe that when OpenNotes become the standard of care, clinicians and patients will enjoy improved efficiency, communication, and experiences of care. The results from the one-year pilot for OpenNotes indicated that 80% of patients chose to read their notes and two-thirds reported clinically important benefits, like improved understanding of their medical condition.3 These patients also felt more in control of their care and were more likely to take their medications as prescribed. Moreover, 86% of patients reported that the availability of clinical notes would determine their choice of a future practice or clinician and 99% of them wanted their current practice to continue offering this feature.
The OpenNotes study also made an impact on medication adherence. According to researchers at Geisinger Health System, more than two-thirds of patients who took medication during the study reported improved adherence to these medications.4 The investigation demonstrated that patients being treated for high blood pressure who were offered OpenNotes were more likely to fill their prescriptions than those without OpenNotes.
Enabling patients to read and amend their chart enhanced opportunities to:
- Detect serious inaccuracies and avoid medical errors
- Share notes with other clinicians
- Reinforce the clinician's findings and recommendations discussed at a visit
- Clarify something the clinician said or did at the visit
- Improve patients' insights into clinicians' decision-making
- Gradually accept and adjust to some diagnoses
- Motivate patients to comply with prescribed behavioral modifications
- Help patients prepare for office visits
- Dispel unfounded worries about what clinicians were finding or thinking
- Involve family and other caregivers in the patient's care
For guidance on implementing OpenNotes, including materials for clinicians, patients, and researchers, please refer to the OpenNotes Toolkit.
When considering the use of OpenNotes, clinicians have voiced concerns regarding the burden on their scarce time, the risk of misunderstandings, and the possibility of confusing patients:5
- Additional time: Additional calls, letters, and emails causing a drain on a physician's time was the biggest worry.
- Misunderstanding doctor language: Physicians worry that patients may not be familiar with the shorthand, abbreviations, and clinical terms that physicians often use in their notes. For example, a patient whose chart includes an unfamiliar reference to "congestive heart failure" might think it refers to an actual failure rather than a manageable heart condition.
- Confusing or upsetting patients: Some physicians worry that their patients may misconstrue the notes or draw inaccurate conclusions about their condition or prognosis. This could lead patients to feel fear, guilt, anger, depression, confusion, frustration, or hopelessness.
The study results found that these concerns were not borne out. For example, less than 8% of doctors reported taking more time to address patients' questions outside of scheduled visits, and less than 20% of doctors reported taking more time writing notes.6 Despite some initial resistance from participating physicians who feared that the program would require more of their time, all agreed to continue with the program.
From the patient perspective, perhaps the biggest barrier to realizing the potential benefits of patient portals and OpenNotes is finding ways to ensure that all patients can access them.
1. Esch T, Mejilla R, Anselmo M, et al. Engaging patients through open notes: an evaluation using mixed methods. BMJ Open 2016;6: e010034. doi:10.1136/ bmjopen-2015-010034.
2. Fostering Patient Engagement. Peterson Center on Healthcare. Available at http://petersonhealthcare.org/fostering-patient-engagement. Accessed 1/10/17.
3. Mende S. The Next Phase of the OpenNotes Movement. Robert Wood Johnson Foundation. February 2, 2016. Available at http://www.rwjf.org/en/culture-of-health/2016/02/the_next_phase_ofth.html. Accessed 2/24/17.
4. Wright E, Darer J, Tang X, Thompson J, Tusing L, Fossa A, Delbanco T, Ngo L, Walker J Sharing Physician Notes Through an Electronic Portal is Associated With Improved Medication Adherence: Quasi-Experimental Study J Med Internet Res 2015;17(10):e226.
5. Esch T, Mejilla R, Anselmo M, et al. Engaging patients through open notes: an evaluation using mixed methods. BMJ Open 2016;6: e010034. doi:10.1136/ bmjopen-2015-010034.
6. Mende S. The Next Phase of the OpenNotes Movement. Robert Wood Johnson Foundation. February 2, 2016. Available at http://www.rwjf.org/en/culture-of-health/2016/02/the_next_phase_ofth.html. Accessed 2/24/17.