Clinical visit notes are an important resource for helping patients and families remember and act on information discussed during a visit, including treatment plans, medication, and care coordination.
Shared visit notes, often referred to as open notes, also help patients become active participants in their own care. Established in 2010, OpenNotes is a national effort to give patients access to shared visit notes.
NYHealth has long supported the spread of open notes throughout New York State as a leading strategy in our consumer empowerment portfolio to promote transparency and patients’ access to their own information. The 21st Century Cures Act, which went into effect in 2021, has helped to accelerate this work by requiring health care providers to make visit notes available to patients electronically and at no charge—galvanizing efforts by NYHealth and our grantee partners to connect more New Yorkers with their open notes.
NYHealth began this signature initiative in 2016 with an initial grant to NYC Health + Hospitals to launch open notes at the largest public hospital system in the country. This pilot was followed by a grant to NewYork-Presbyterian to test open notes among its elderly Medicare patients through its accountable care organization.
To help the spread of open notes to more patients throughout New York State, NYHealth supported 10 geographically dispersed hospital systems across the State in implementing open notes at their facilities in 2017. We then turned to federally qualified health centers (FQHCs) and other nonhospital settings in 2019 to ensure that all New Yorkers, especially those in underserved communities, have access to their own health information.
Among the projects:
- University of Rochester Medical Center and Rochester Regional Health—two competing hospitals—came together for region-wide implementation of open notes. As a result, patients reported having a better understanding of their health, more trust in their doctors, and an improved ability to follow their treatment plans.
- NYC Health + Hospitals (H+H) piloted open notes in all outpatient settings, except behavioral health, at three of its hospital sites. By the close of its grant project, nearly 1,500 providers across 174 departments had shared more than 374,000 notes.
- NewYork-Presbyterian and its partner health system entities piloted open notes at their accountable care organization, which served 31,000 Medicare patients, of whom 29% are over the age of 80. By the end of the grant period, more than 34,000 notes had been shared with patients.
- Care for the Homeless provides integrated health services, shelter, and supportive services to people experiencing homelessness across New York City and operates 19 FQHCs. Care for the Homeless introduced outreach specialists to contact patients and help them enroll in a patient portal to see their notes. Over the course of this grant, more than 1,100 patients were engaged and portal usage among patients doubled.
- The Institute for Family Health, one of the largest FQHC networks in New York State, contracted with a vendor to translate notes into Spanish so all patients, regardless of their level of English proficiency, can understand and use their health information. By the end of the grant period, more than 50,000 patients had enrolled in the MyChart online tool, with nearly 76,500 notes shared.
Many patients surveyed and interviewed as part of these NYHealth-supported initiatives have reported positive effects and interactions with reading their notes. For non-English speakers, open notes have been particularly useful; as one patient at H+H shared: “The consistency in what my doctor told me during the visit and what they would write down in their notes is what generated my trust in my doctors and in the care that I was receiving. At times, we don’t understand the purpose of an exam or a treatment but if you review your notes, the explanation is there. If you don’t speak English, you can easily copy the information and translate it using online tools.”
After the 21st Century Cures Act went into effect, a growing number of health systems began adopting open notes. However, the level of compliance and, most importantly, the proactive use of open notes to improve care varies among hospitals and health systems.
NYHealth saw the federal mandate as an excellent opportunity for hospital systems not only to comply with information-sharing requirements, but also to use open notes to spark a culture change and more meaningfully engage patients. In 2022, NYHealth—in partnership with the OpenNotes national program office—provided 16 hospitals with funding, technical assistance, and peer-learning opportunities to implement and share open notes effectively.
The participating hospitals pursued a range of activities in support of OpenNotes implementation, ranging from provider and patient engagement to patient portal enhancements. Mount Sinai Health System established a partnership with the New York Public Library, offering over 100 in-person training sessions to local library patrons to support patient portal usage. The hospital partners also updated their patient portals to be more user-friendly and navigable. As part of their grant, Rochester Regional sought and incorporated patient feedback to support updates to patient portal language and created FAQs to respond to their most common questions. Over the course of their OpenNotes grant, Brooklyn-based Wyckoff Heights Medical Center reported an increase in patient portal enrollment from 5,900 to more than 8,500, and two participating Health + Hospitals saw patient portal usage double throughout the grant period.
Recognizing the diversity of their patient populations, several sites were also committed to supporting the needs of both English and non-English speaking patients, developing a range of resources to improve patient access and understanding. NYC Health and Hospitals developed physical and digital marketing materials to promote awareness of MyChart patient portal, including four educational videos available in 13 languages. State University of New York Downstate Health Sciences University developed a communications campaign, including translating messaging into Spanish and Haitian Kreyol, and State University of New York Health Science Center at Syracuse developed and disseminated four OpenNotes/MyChart education videos to increase use and access to OpenNotes.
NYHealth, in partnership with the OpenNotes national program office, provided the 14 non-hospital systems selected through this RFP with funding, technical assistance, and peer-learning opportunities to share open notes with patients effectively. The systems selected for awards and participation in technical assistance represent nearly all regions of the State and various types of primary care providers. These systems serve marginalized patient populations, including people of color, people with low income, immigrants and refugees, non-English speakers, LGBTQ youth, homebound older adults, individuals experiencing homelessness, and individuals with intellectual/developmental disabilities.
As part of this cohort, the participating systems saw significant improvements in engagement with both providers and patients alike. Jericho Road Community Health Center, a Buffalo-based FQHC serving nearly 24,000 patients, utilized community health workers to support patient engagement efforts and translated their website into 6 languages to better meet their patients’ needs. The Door’s Adolescent Health Center saw a nearly 25% increase in patient portal engagement from their patients throughout the grant period, and Parker Jewish Institute for Health Care and Rehabilitation led an internal committee to lead patient portal enhancements, improving efforts to support communication with both patients and their caregivers.
Led by the OpenNotes national office, the cohorts also participated in a 12-month learning collaborative to explore strategies and tools for note-sharing, including understanding the new federal mandate; sustaining clinician engagement; adopting effective communication strategies to introduce open notes to both providers and patients; and sharing notes in the context of adolescent, pediatric, inpatient, and behavioral health settings, among other areas.
Through these combined efforts, health care providers across the State have made great strides, sharing notes with more than 1 million patients and using innovative strategies to engage them. New York State has gone from worst in the nation to among the best in terms of adoption. As a result, ever-greater numbers of New Yorkers have access to their clinical notes to make choices about their health care, advocate for themselves or a loved one, and engage in shared decision-making.
Health care providers have shared visit notes with more than 1 million New Yorkers.
