Help your health system make the best of open notes for patients and care partners

Help your health system make the best of open notes for patients and care partners
As a patient and family advisor, you clearly know what it means to be activated and engaged. Patients, family advisors and activists have long been leaders in speaking up about the need for more transparency in health care and for partnerships with clinicians in managing care. The federal mandate to share notes with patients represents an important step in making fully transparent communication a reality.
The notes clinicians prepare and place in medical records are more detailed than “after visit summaries” patients receive after a visit to a clinician. The Health Insurance Portability and Accountability Act (HIPAA) provides patients with the legal right to access complete visit notes, but until recently the only option was to go through a sometimes arduous, lengthy, and costly process to obtain records. OpenNotes started because its founders felt patients and their family members would benefit from easy access to their full medical records, including visit notes.
As of April 5, 2021, all U.S. healthcare systems are required to electronically share clinicians’ visit notes with patients at no charge. This is required as part of the 21st Century Cures Act program rule on Interoperability, Information Blocking & ONC Health IT Certification. In theory, all patients who are registered on their health systems’ patient portals should now have easy access to their visit notes. However, a lot will depend on how health systems implement open notes and how they educate and inform both their staff, and patients and families. Many patients are unaware of the benefits of open notes and don’t know they can have access to their notes. There is much work to be done to bring open notes to the attention of patients and families. This is where the PFAC comes in!
“Open notes allow my doctors and me to be on the same page about what we discussed and how we should proceed, as well as to sort out any inconsistencies. Our family also found open notes invaluable when a member became incapable of managing her own health care, and information needed to be shared among multiple caregivers. I can’t imagine going back to “the old days.”
— Naomi Price, Patient Advocate and Consumer Representative, Northwest OpenNotes Consortium
Inviting Patients to Read Their Doctors’ Notes: A Quasi-experimental Study and a Look Ahead Annals of Internal Medicine (2012)
At Kaiser Permanente Northwest, Naomi Price, a member of the PFAC at the time, learned about OpenNotes and brought it up as a topic for consideration at a PFAC meeting. Around the same time, the system’s informatics team also became interested in displaying open notes.The PFAC strongly supported bringing open notes to Kaiser Permanente Northwest and partnered with the informatics team to present the ideat to the Board of Directors. According to Jonathan Bullock, Program Manager for Patient and Family Centered Care at Kaiser Permanente Northwest, it was the patient presence and advocacy at that meeting that convinced the Board to go ahead with OpenNotes and led them to decide to do a “big bang” implementation, launching across the whole system at once.
The OpenNotes website has a lot of good information, including research publications, toolkits, webinars, and patient stories. Encourage your PFAC members to spend some time looking at the website to learn more.
Some quick facts: In a 2010 OpenNotes study, 99% of patients wanted open notes to continue, and 85% said the availability of open notes would affect their future choice of provider. Why?
“The concept of sharing clinic notes with patients will allow patients/caregivers to participate to a greater extent in their own care. As a patient, I am very excited to be able to review my clinic notes “at my own leisure” since all of the information is not always easy to absorb at the time of the visit. As a patient/family advisor, I participated as part of the committee planning open notes at UVM Medical Center. These meetings involved a lot of discussion between physicians, staff, and patient/family members. This allowed everyone to consider different viewpoints about the best way to roll out open notes, tailoring it to our specific medical center. I highly recommend that other centers considering open notes include patient/family input in the planning process.”
— Margery Rosenblatt, University of Vermont Medical Center Patient/Family Advisor
Develop a plan with PFAC members about the steps you’ll take to communicate with key health system decision-makers.
In 2016, UVM Medical Center formed an open notes work group that included three patient/family advisors and representatives from departments across the system. The group was charged with making recommendations to the system’s leadership leading up to the implementation of open notes. PFAC members continued to participate in the workgroup following implementation in an oversight role. The University of Vermont Medical Center (UVM) started offering open notes in June of 2017.
“Having patient/family advisors as part of the working team was invaluable as we worked to make recommendations for what open notes will look like at the UVM Medical Center. They were incredibly committed to the process, skilled at asking the difficult questions and respectfully challenging the group when there was resistance or reluctance, and also very interested in working towards solutions that would meet the needs of both patients and providers. I feel confident in saying that we would not have been able to move forward as quickly or as unified as we have been without the voice of the patient at the table.”
Amy Cohen, Patient- and Family-Centered Care Program Manager
The PFAC has an important role in informing and educating patients and families about open notes and about the importance of registering on the patient portal. In addition to individual advisors sharing information through personal networks, you can work with your health system’s marketing and communications staff to develop materials (see examples on the open notes website) including:
After implementation, there are opportunities to improve open notes. Advisors should periodically give feedback and guide any recommended changes.
Beth Israel Deaconess Medical Center’s (BIDMC) hospital-wide PFAC has provided feedback on open notes and recommendations for improvements. Members have also advised the OpenNotes research team on projects related to patient experience, safety, and co-production of notes.BIDMC patients have also publicly shared their open notes experiences, in partnership with staff, at conferences and in articles.
We have many useful resources and can connect your system with other similar healthcare systems that have implemented and/or have faced similar challenges and concerns.
Share your PFAC’s open notes story with us! We are always looking for examples of how PFACs partner with health systems to advance the effectiveness of open notes.
For more information, contact: Deb Wachenheim, Assistant Director, Dissemination, at dwachenh [at] bidmc.harvard.edu.
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NEW WEBINAR
Getting It Write: What To Do Now That Patients in England Can Read Their GP Notes
Tuesday, November 1, 2022 | 8am Pacific Standard Time (PST)
11am Eastern Standard Time (EST) / 3pm Greenwich Mean Time (GMT)
While open notes have been the “law of the land” in the United States for more than a year, in England, adult patients accessing care through the National Health Service (NHS) will have access to their primary care record online for the first time starting Nov. 1, 2022.
In this webinar, we’ll be joined by open notes experts and discuss what this change means for patients and general practitioner (GP) staff in England.