Designed for health professionals learning about open notes, this Sharing Open Notes Toolkit provides materials to help you gain an understanding of the benefits of sharing notes with patients, find out how open notes might effect your work flow and note writing, and learn how to make the most out of sharing your notes with patients.
When patients read and review their health information, especially the notes written after a medical visit, can improve communication between patients and health professionals, enhance engagement, and help patients become more active in their own care. Moreover, research continues to show that engaged patients have better health outcomes.
Deborah Wachenheim
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617-975-7617
The original OpenNotes study involving patients at Beth Israel Deaconess Medical Center in Boston, Geisinger Health System in rural Pennsylvania, and Harborview Medical Center in Seattle found that 80% of patients offered open notes read at least one note over the year-long study period, and 99% wanted the practice to continue, whether or not they chose to read their notes. Subsequent survey data from Kaiser Permanente (NW) and the Department of Veteran’s Affairs (VA), the first system to adopt open notes across all disciplines, have shown similar results.
Study Highlights:
What Patients Value About Reading Visit Notes: A Qualitative Inquiry of Patient Experiences With Their Health Information Journal of Medical Internet Research (2017)
Inviting Patients to Read Their Doctors’ Notes: A Quasi-experimental Study and a Look Ahead Annals of Internal Medicine (2012)
A recent study published in BMJ Quality and Safety showed that 99% of patients felt the same or better about their doctor after reading notes, even after reading as few as one note. Positive effects on the patient-doctor relationship were most dramatic among patients generally thought to be most vulnerable – older, non-Caucasian patients with lower self-reported health and fewer formal years of education. This suggests that the simple act of inviting patients to read their notes has the power to break down barriers in care. Additionally, more than half of doctors felt that patient satisfaction and trust increased with open notes.
“Although some people worry that poorly written, offensive, or even erroneous notes might erode trust and damage the patient-doctor relationship, results of a recent study suggest the opposite. Overall, patients felt the same or better about the doctor, and clinicians thought sharing notes was a way to improve patient satisfaction, trust and safety.”
— Sigall Bell, MD, OpenNotes, Director of Patient Safety and Discovery
As patients and their caregivers become increasingly interested in their health data, open notes can provide a way for them to make health care safer. Health professionals review thousands of notes, but patients review only their own. Now that patients have the ability to review records there is more potential for enhancing communication and safety partnerships between patients and clinicians, identifying documentation errors, and preventing missed follow-up tests or referrals in the gap between visits.
Studies show that patients forget between 40 and 80% of the information communicated during a visit. Patients and families report that ready access to notes reminds them about important next steps, tests, and procedures, as they review what happened at the visit in the comfort of their own homes.
75% of patients who responded to a comprehensive safety survey reported that reading notes helped them better understand the meaning of results and the reasons for referrals and tests. Up to 50% reported that reading notes helped them complete follow up appointments, suggesting that better understanding of the rationale behind treatment plans and tests can lead to increased patient activation.
“It doesn’t make me lose confidence in them and, in fact, I think I respect them more for admitting that there was a mistake and apologizing for it rather than sort of brushing it under the table.”
— Eileen, a patient
Open notes can improve accuracy and help in identifying mistakes. Patients know themselves best. Reviewing their own notes helps them identify and report documentation errors that may be clinically important.
Open notes can empower patients as safety partners and increase transparency and inclusivity. As demonstrated in medical error disclosure, open and honest communication can help decrease litigation. Open notes may also build trust, a smart way to minimize, and at times prevent conflict.
Study Highlights:
“I felt like my care was safer, as I knew that patients would be able to update me if I didn’t get it right.”
— A doctor
The growing need to engage caregivers and care partners in the care processes more effectively is documented in the September 2016 NASEM report, Families Caring for an Aging American, as well as articles from the AARP, and the New York Times.
Family members and other care partners are among the most vigilant of health system stakeholders. Work undertaken by Jennifer Wolff, PhD, from Johns Hopkins Bloomberg School of Public Health, demonstrates the benefit of shared access to notes.
Wolff also found the benefits of open notes as powerful for care partners as for patients themselves. Open notes offer an invaluable tool for improving transparency, communication and the continuity of care, while making the patient-care partner therapeutic alliance stronger through more productive discussion and greater agreement about patient care.
Inviting patients and care partners to read doctors’ notes: OpenNotes and shared access to electronic medical records Journal of the American Medical Informatics Association
Patients, care partners, and shared access to the patient portal: online practices at an integrated health system Journal of the American Medical Informatics Association
Note Sharing Helps Care Partners Advocate for Patients Who Speak Limited English
Many health professionals are concerned that open notes will increase their workload. They worry about the length of the visit, increases in email traffic, and changes in the way they document visits. In our research and in listening to the experience of hundreds of health systems that have implemented open notes, the vast majority of doctors, nurses, and other clinicians report neither longer visits nor increased email traffic. If they notice a change at all, they are more likely to state that patients are more prepared for visits and more engaged in their care.
About 20% of clinicians do report making some changes in the way they document, though most of those changes are described as minor, appropriate, and productive. For example, they note reducing the use of acronyms and potentially judgmental language, as well as defining medical terms and making language simpler where appropriate.
Since HIPAA entitles virtually all patients to obtain copies of their complete medical records at any time, it is always best to write notes with the assumption that patients may read them. In the initial OpenNotes study, most doctors reported that they did not change the way they wrote their notes. While a pre-study survey showed that 50% of doctors volunteering for the study anticipated that open notes would impact their note writing, after a year of experience with open notes, only 20% reported changing what they wrote. Most reporting the changes were minor. Moreover, patients did not expect health professionals to write notes differently. They often reported researching things they didn’t understand, or bringing them up at their next appointment.
Over time, however, many clinicians do report changing the way they write their notes, most often to provide clarity. Most who say they’ve changed the way they write believe the changes have made the notes better, not just for the patient, but for other health professionals who also rely on the notes.
But some report that they have changed how they documented potentially sensitive topics. These included mental health and illness, obesity, substance abuse, sexual history, elder, child or spousal abuse, driving privileges, or suspicions of life-threatening illness. These are not new dilemmas, but they gain urgency in an era of transparency, as exemplified by routine sharing of visit notes.
Specific Suggestions for Writing Notes
Patients learning to read their doctors’ notes: the importance of reminders Journal of the American Medical Informatics Association (JAMIA)
Your Patient Is Now Reading Your Note: Opportunities, Problems, and Prospects American Journal of Medicine
Now that you are sharing open notes, there are many opportunities to create efficiencies for you and your patients. Reading the notes helps patients remember treatment plans. Patients also say note reading helps them take their medications as prescribed. Many patients say they email or call their health professionals less because they answer questions by reading their notes. Furthermore, both health professionals and patients report that engaging with notes helps set the agenda, makes the visit more efficient, and helps both parties feel more satisfied with the visit and ongoing relationship.
Messaging patients about the benefits of communicating using the portal, as well as access to open notes, can be an effective way to increase portal registration. We also suggest sending patients home with printed materials and providing in person support at office visits to help patients register on the portal.
For optimal success, it’s critical to communicate with patients about what open notes are and the potential benefits of reading notes. We’ve seen that institutions that let patients know about the availability of open notes see substantial increases in portal registration.
For a comprehensive set of suggestions and materials for communicating with patients, check out our Communications Toolkit.
Communicating with Patients, Families, and Care Partners About Open Notes
Letter to Staff about OpenNotes
Letter to Patients about OpenNotes
Email to Patients – Your Note is Ready to Read
We find that the simple act of inviting patients to read their notes can in itself mean a lot. Our research has shown that patient satisfaction and trust improve with note sharing. Patients who have traditionally been considered among the most vulnerable report the biggest change in their relationship with their health professional with as little as one shared note.
Talk about the notes. Taking a few minutes at an appointment to talk about notes can strengthen your relationship with your patient. Checking in with your patient to see if a note accurately captures a visit can promote mutual understanding and allow you to gauge the level of understanding of the care plan.
Create an open notes button. Even the most tech savvy patients find many patient portals difficult to navigate and give up before locating the information they’re looking for. Calling out ‘Open Notes’ can help patients get where they need to go. Creating an Open Notes button that takes the patient from the landing page to the notes page ensures that they won’t get lost.
Assess satisfaction. To understand how your patients feel about using their notes, consider adding questions about open notes to your patient surveys. Use this as an opportunity to learn about the ways they want to engage with their health information.
Send email reminders. To better understand how your patients feel about using their notes, send them email reminders. We have learned that sending an email to patients when a note is signed and ready to read is highly effective for keeping patients engaged with their medical information. Institutions that send email reminders have a read rate roughly three times that of practices that don’t send reminders.
Get feedback. Work with a staff member, for example, a patient relations staff person, to streamline processes for patient feedback, especially as it relates to helping patients locate their notes on the portal or correcting inaccuracies in the record.
“When I read the notes, I realized I hadn’t described my daughter’s condition in a way that helped the doctor understand what she needed. I was able to go back and clarify so we could develop a better treatment plan.”
— Amy, a mom
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