Implementation

Making the Case for Open Notes

Inviting patients to read and review their health information, especially the notes written after a medical visit, is an important way to improve communication between patients and health professionals, to enhance engagement, and to help patients become more active in their own care. Moreover, research continues to show that engaged patients have better health outcomes.

Patients Want Open Notes and Report Benefits from Reading Their Notes

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:

• 77-87% of patients said open notes helped them feel more in control of their care.
• 60-78% of those taking medications reported better adherence.
• 85% of patients said they would choose a health professional based on the availability of open notes.

Patient and Clinician Satisfaction Improves with Shared Notes

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

Open Notes Make Care Safer

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. Giving patients the ability to review records offers the 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.

Improve accuracy and get help in identifying mistakes. Patients know themselves best. Allowing them to review their own notes helps them identify and report documentation errors that may be clinically important.

Note sharing sends a strong message about transparency and inclusivity, empowering patients as safety partners. 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:

• 7% of patients reported contacting their doctor’s office about something they read in their note.
• Among those patients, 29% did so because of a perceived error in the record, suggesting an opportunity to improve safety.
• 85% of those who reported an error were satisfied with how their doctor handled the issue.
• No doctor reported ordering additional tests or referrals as a result of open notes.

“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

Open Notes Benefit Care Partners

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.

Study Highlights:

• Patients of all ages elected to share access to their patient portal account.
• 42% say they share access because their care partner helps them manage health care activities.
• 30% say they share access with a care partner in case of emergency.
• 18% say they share access because they themselves do not use a computer.

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.

More Study Highlights:

• A third of care partners accessed notes because they were not able to attend an appointment.
• 86% of patients and 82% of care partners had more productive discussions about the patient’s care.
• 85% of patients and 79% of care partners stated they were more likely to agree about the patient’s treatment plan.
• 94% of patients and their care partners reported better understanding of the patients’ health conditions, better remembered their care plans, and felt more in control of care.

Health Professionals Report Little Change in Workflow

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.

2: Getting Ready to Launch

Preparing to Roll Out Open Notes

No two systems implement open notes the same way. While in some respects it is a relatively simple intervention, there are many things to consider as institutions think through how the practice of sharing visit notes will work for their specific circumstances.

We encourage you to invite health professionals and patient representatives from your institution to participate in planning for open notes, and for monitoring its evolution after its launch. We offer some suggestions based on what we’ve learned from many colleagues and collaborators nationwide.

Institutions Need to Make Some Decisions

About a half of those moving toward fully transparent medical records choose first to ‘pilot’ open notes at the institutional level, or within specific departments. Our experience to date is that pilot programs have almost invariably yielded positive results and provide data that instill confidence and set the stage for broader implementation.

Which departments or settings will share notes? Some systems, institutions, or practices implement open notes in all clinical settings at the same time. Others have felt more comfortable starting in one area, such as primary care, and gradually adding specialties, emergency medicine and inpatient notes over time.

We recommend either implementing open notes across the board as a matter of policy, or with a health professional “opt-out” policy. Our experience is that both approaches work well and can be reassuring to health professionals. We also know that some institutions have implemented with a requirement for health professionals to “opt-in” to note sharing at the clinician or patient level. This can create a frustrating patient experience, and it can take months or even years before the benefits of note sharing are recognized. Therefore, it is important to consider carefully both an “opt-out or “opt-in” process. Decide also how your institution will grant permission to those wanting to opt out. For example, at the Beth Israel Deaconess Medical Center a clinician wishing to do so needs explicit permission from the department head.

You can read more about specific recommendations in pediatric and adolescent medicine, mental health settings, and for caregivers.

Which health care professionals will share their notes? We believe patients can benefit from reading notes written by most health professionals involved in their care. It’s important to consider if you’ll open only doctors’ notes, or open notes more broadly, by including nurses, nurse practitioners, case managers, social workers, physician assistants, occupational and physical therapists, clinical pharmacists, dieticians, or others who write notes. You may also need to think about processes for sharing notes written by fellows, residents, medical and nursing students, and other trainees.

What types of notes will you share? Will you open all types of notes (phone, office visit, letters, etc.) or limit them to certain encounters? Some systems make all electronic notes available, including some written prior to starting the open notes initiatives. Most choose to open notes beginning with the organization’s implementation start date.

How will you accommodate care partners? Many patients tell us they share their health information with trusted care partners. In addition to secure access for patients, many systems have implemented proxy access for care partners with patient permission. It may also be helpful to give patients the ability to select which information they want to share with their care partners.

How will you share notes with patients?

• While most organizations implement open notes electronically through patient portals, notes can also be printed at the end of a visit, emailed, or mailed to the patient later.
• We suggest that you review your portal and make every effort to make it easy for patients to find their open notes when they choose to do so.
• We strongly recommend reminding patients by email when a note is available.
• We recommend offering clinicians the ability to keep a note ‘private’ (though our experience is that fewer than 1% of notes are hidden, and the percentage drops over time as health professionals and patients gain comfort with the new practice). In such cases, it’s important to communicate with patients about such decisions.
• It’s also important to develop a workflow to manage patients’ requests to change or amend their notes. NOTE: Very few patients contact the clinician’s office about something in the note, but among those who do, nearly 30% discovered an error in the record, suggesting an opportunity to improve safety.

How will you facilitate amendments to the record? In most practices, changing a note is at the health professional’s discretion. Patients and families may catch clinically important mistakes in notes, or find lapses in follow ups that, once rectified, improve safety. Health professionals can often use existing mechanisms to modify a note as they move from paper to electronic records, for example, through addenda or other institutional procedures.

Institutions may also develop new methods for patients to report inaccuracies and receive notification that changes have been made. You may want to designate a specific contact – a clinical staff person to triage concern or a member of a patient relations team – for patients who have concerns they would like to address with someone other than their clinician.

“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

Tools for Implementation

For optimal success, it’s critical to communicate with patients, health professionals, administrators, and hospital leadership about what open notes are and how they will be implemented, as well as the potential benefits of sharing 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 staff, clinicians, patients, and the public, check out our Communications Toolkit.

“We often find that clinicians are unaware that their own institution is doing open notes, and that’s only because a communications strategy has not been implemented with the roll out.”

— John Santa, MD, OpenNotes, Director of Dissemination

Communicating with Health Professionals and Other Staff About Open Notes

• Organize grand rounds, town hall meetings, or smaller talks to present data about open notes.
• Identify ‘Open Notes Champions’ across specialties to help get the word out.
• Share communication from the CEO and other leadership about implementation plans, including data about the benefits of sharing notes.
• Prepare a set of FAQs that answers questions health professionals may have. Feel free to use these FAQs to start.
• Share OpenNotes materials on your intranet, including research, links to videos, patient and health professional FAQs.
• Write an article for your intranet and for newsletters.
• Create a clearly identified notes button on your web portal for ease of navigation.
• Use the OpenNotes logo in your communication and outreach materials. Send us a message to start the logo request process. Please include the name of your organization and how you intend to use the logo.

Communicating with Patients, Families, and Care Partners About Open Notes

• Send an introductory e-mail about your web portal and open notes.
• Create an open notes page on your external website and patient portal. You can include links to stories and videos, FAQs, instructions for finding their notes in the EHR, and other helpful resources.
• Use the OpenNotes logo and name on your website, portal and other communications materials so that patients know the notes are different from other parts of their medical record.
• Write an article for your patient newsletter and external website.
• Create waiting room posters and materials to give to patients at appointments. You can readily adapt material from this website for such purposes.
• Let your patients know about open notes on social media.
• Distribute a press release and/or advertise in local media.
• Collect and share stories about health professionals and patients who are successfully sharing notes.

3: Making OpenNotes Work Well

Getting More out of the EHR and Patient Portal

Once you’re up and running with 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.

More than 90% of patients say they want easy access to their notes. 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.

The Invitation Alone is Important

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.

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.

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.

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