Patient & Family Advisory Councils (PFAC)

PFACs Lead the Way in Change

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

Roles for Advisors

What Roles Can Patient and Family Advisors Have in Open Notes? 

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.

1. Learn more about OpenNotes. 

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?

• Reading notes helps patients remember what was discussed during the healthcare visit and follow up with next steps.
• Patients can share information with care partners and caregivers, which is especially helpful for those who are most vulnerable and those who may need help managing their care.
• Patients with access to their notes are better at taking their medications as prescribed.
• Patients are able to catch errors in their medical records, ensuring accuracy and possibly preventing further mistakes from occurring.
• Patients are able to prepare for future visits by re-reading previous visit notes and writing down questions.
• OpenNotes helps patients feel that they are true and valued partners in their own health care, invited to participate in shared decision-making.

“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

2. Learn more about your health system’s implementation and how to partner to ensure it is effective. 

Develop a plan with PFAC members about the steps you’ll take to communicate with key health system decision-makers.

• Get an open notes discussion on your PFAC agenda to share what you have learned from reviewing the OpenNotes website.
• Invite health system leadership such as the Chief Information Officer, Chief Medical Information Officer and/or Chief Medical Officer to a meeting to discuss open notes at your system.
• Find out what types of notes are being shared, how leadership is working to inform and educate staff, and how patients/families are being informed about notes and how to find them.
• Is there a working group on open notes? If yes, ask to include PFAC members and/or get regular updates from/provide regular feedback to the working group.
• Provide feedback on how consumer-friendly and usable the patient portal is.

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

3. Partner to help spread the word. 

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:

• An open notes web page for your health system’s external website and for the patient portal (and link to the OpenNotes FAQs for patients);
  Posters, flyers, and fact sheets for waiting and examination rooms;
• Information for waiting room and patient room televisions;
• Newsletter articles;
• Stories for your health system’s social media channel;
• Outreach to local media to get them interested in your open notes story;
• Advisor information tables in highly-trafficked areas; and
• Advisors and staff to assist patients in registering for the patient portal using on-site computers.

4. Participate in ongoing evaluation and improvement. 

After implementation, there are opportunities to improve open notes. Advisors should periodically give feedback and guide any recommended changes.

• Help create communications materials to increase portal registration.
• Advocate for education on the sharing of mental health notes if your system is not yet sharing them.
• Advise on the development and implementation of a patient feedback survey.
• Provide feedback on survey data and input on how to resolve issues.
• If there is an ongoing open notes oversight committee, advisors should be members.

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.