Open notes are an important tool for improving patient safety.
Can open notes help me improve quality of care and medication adherence?
Yes. A lack of adherence to medications can also have serious consequences for safety and quality of care. Two-thirds of surveyed patients reported that notes help them understand the reasons a medication was prescribed and make them feel more in control of their medications. 14% reported that reading the notes makes them more likely to take their medications as prescribed. In addition, reading notes can improve quality of care by fostering stronger relationships between patients and their healthcare providers and shared decision-making (see How might open notes impact my partnerships with patients? below). Studies show that patient engagement is associated with better experiences of care. Patients who read notes report increased patient engagement behaviors such as understanding their health conditions, feeling more informed, making care decisions, and remembering the care plan.
Patients managing medications and reading their visit notes: A survey of OpenNotes participants | Ann Intern Med (2019)
How might open notes impact documentation errors and diagnostic accuracy?
Patients who read notes can identify clinically relevant documentation errors and contribute to diagnostic accuracy. Electronic Health Records (EHR) can have unrecognized documentation errors that are then propagated from one visit to another. While clinicians oversee the care of hundreds, sometimes a thousand patients or more, patients and care partners only look at their own open notes, and they are “experts” at their own medical history. This can allow them to catch and report documentation errors before they potentially lead to serious consequences. In a survey conducted at three health care organizations across the U.S., 21% of 30,000 surveyed patients reported at least one mistake in their notes. Among those patients, 42% said the mistake they found was somewhat or very serious. Twenty-six percent of doctors in another survey reported that they anticipate non-trivial errors in notes.
Health systems need to develop ways for patients and care partners to report errors so that the right information gets to the right person at the right time. Researchers developed and studied a reporting tool that patients could fill out after reading a note. Of the submitted reports, 21% identified a possible documentation error. After further review, 2/3 of these reports identified an actual or possible safety concern, and the majority led to a change in the medical record or to patient care.
Researchers are working on innovative ways to team up with patients and families to ensure safe care. This is especially important for diagnostic safety in ambulatory (out-patient) care, because patients and families have unique information that is important for making a correct and accurate diagnosis that healthcare providers may not know. For example, patients/families are the first to know about changes in symptoms, and they are often the only ones who know about events that occur outside the healthcare center or between visits; such as tests at other centers or major life events. They are the only “connecting thread” between different visits and are therefore in a unique position to notice important safety-related issues that providers may not observe – so called “blindspots.” In a study of nearly 30,000 patients, about 7% of patients who read notes reported a possible problem in their notes related to the diagnostic process; over half of these (nearly 1000) were found to be blindspots. Looking for a way to help patients/families bring their unique insights back to clinicians and the medical record, researchers co-developed with patients a tool called “OurDX.” Before upcoming visits, patients received an invitation to report their visit priorities, recent medical history, and potential concerns. The tool helped to align patient and clinician agendas, obtain accurate histories in patients’ own words, and identify potential blindspots, so that they could be addressed in real time. Practical tools to help patients and families engage in the diagnostic process is critical to improving diagnostic safety.
Partnering with patients and families living with chronic conditions to coproduce diagnostic safety through OurDX: A previsit online engagement tool | J Am Med Inform Assoc (2023)
Patient and family contributions to improve the diagnostic process through the OurDX electronic health record tool: A mixed method analysis | BMJ Qual Saf (2023)
How do open notes help care partners who support elderly and chronically ill patients?
Access to notes can help care partners manage the patient’s care more effectively. Informal (family and friend) care partners of elderly or chronically ill patients are under-supported and lack adequate health information for safe care. With more than 40 million care partners in the U.S., they are a population that can help improve safety and quality of care, especially in between healthcare visits and during care transitions.
Surveyed care partners report even greater benefits from notes than the patients themselves. More than 80% of them say notes helped them understand the reason for a test. This made them more likely to check and understand test results. 92% reported notes help them understand reasons for referrals. Additionally, more than 50% said notes help them assist loved ones to complete tests and to take medications as prescribed.
Empowering informal caregivers with health information: OpenNotes as a safety strategy | Jt Comm J Qual Patient Saf (2018)
How do open notes impact marginalized patients?
Studies have shown that patients in marginalized populations may particularly benefit from open notes for understanding their health and engaging in their care. Patients who have traditionally been marginalized by society - including less formally educated, non-English speakers, people of color and others - may be at risk of healthcare disparities, and also face several barriers to understanding, remembering, and completing next steps in ambulatory care. In a large study at 3 sites, marginalized patient populations reported benefits from note-reading that were as substantial or more substantial than their counterparts. Patients with lower levels of formal education as well as Black, Asian, and Hispanic or Latino patients were more likely than their counterparts to report notes as extremely important for remembering their care plan, feeling informed, and making decisions about their care. When using the OurDX tool, patients self-identifying as Black or Multiple races were more likely to report a diagnostic breakdown in their notes. Patients who preferred a language other than English were five times as likely as English-preferring patients to report they did not feel heard in the diagnostic process. Identifying these concerns at the point of care can help raise clinician awareness about diagnostic processes at risk, and motivate responses to prevent further delays, problems, or downstream harm.
Partnering with patients and families to improve diagnostic safety through the OurDX tool: Effects of race, ethnicity, and language preference | Appl Clin Inform (2023)
The importance of visit notes on patient portals for engaging less educated and nonwhite patients: Survey study | J Med Internet Res (2018)
What is the role of open notes in resident patient engagement and safety education?
Open notes offer a tangible way to teach medical students and residents in GME training programs about patient engagement and its relationship to patient safety. In particular, open notes may serve as a powerful educational tool for medical students and resident physicians to receive feedback on accuracy and communication with patients. In one study, a majority of surveyed residents indicated that patient feedback on their notes could improve communication with patients. As patients can identify and report documentation errors, open notes may also be used as a way to teach resident physicians how to communicate effectively with patients about perceived errors. Summary points from this study include:
- Before sharing notes, residents and their clinic preceptors had mixed views about open notes; while they anticipated patient benefits, they worried about effects on workflow
- The majority of residents anticipated that open notes could improve patient engagement and patient safety
- Residents believed that patients should report errors in their notes
- Open notes offered a tangible way to teach patient engagement in GME programs
- Educational efforts could be linked directly to safety curricula
- Residents were interested in learning how to write notes that patients read
- Residents reported that feedback from patients on their notes could help them improve communication
- Open notes may be used in the future as a way to provide learners feedback on communication during the visit and on their visit notes
- Patients could identify copy/paste behaviors
- Students learned lessons powerfully when provided by patient feedback
OpenNotes in teaching clinics: A multi-site survey of residents to identify anticipated attitudes and guidance for programs | J Grad Med Educ (2018)
How might open notes impact my partnerships with patients?
Research shows that greater healthcare transparency can significantly improve trust and strengthen the patient-doctor relationship. Care plan adherence and follow-up, speaking up about safety concerns, and participating fully in shared decision-making – key behaviors for strong patient-clinician partnerships – are influenced by patient perceptions of trust, teamwork, and activation in healthcare. Such relational attributes are central to patient partnership in safety and can be strengthened by the transparency offered with open notes. Transparency and trust go hand-in-hand. Even the invitation to read clinicians’ notes alone, regardless of whether patients read notes or not, may strengthen the patient-clinician relationship.
Sharing notes can strengthen or strain trust in the provider. For patients who already had negative perceptions of the doctor, faulty or judgmental notes could further cast negative feelings about the provider. However, despite clinicians’ concerns about errors and offending language, open notes overall more often helped to strengthen this partnership. In fact, 97% of surveyed patients, families and care partners report the same or greater trust, teamwork, and alignment of goals with providers after reading at least one note. Patients who were older, male, non-white, had fair/poor health, or had less formal education were more likely to report feeling better about their doctor after reading their notes. Patients who read more notes indicated improved shared-decision making with their clinicians.
When doctors share visit notes with patients: A study of patient and doctor perceptions of documentation errors, safety opportunities and the patient-doctor relationship | BMJ Qual Saf (2017)
Tackling ambulatory safety risks through patient engagement: What 10,000 patients and families say about safety-related knowledge, behaviors, and attitudes after reading visit notes | J Patient Saf (2021)
