What Was It My Doctor Said? The Funders Behind the Movement for Open Notes

Can the simple act of sharing a healthcare provider's notes with a patient improve health outcomes? The OpenNotes movement thinks it can and, today, millions of patients in 37 states have access to notes in their medical records. 

If you've ever been at a doctor's office, worried you won't remember all the things they're telling you, you'll be able to grasp the logic of OpenNotes. Good things happen when patients are able to access and review what a healthcare provider thought and said during a visit. They are more likely to take medications as prescribed and follow recommended treatment plans. This means that the care they receive is more likely to be effective. In turn, that can help cut medical costs. 

OpenNotes owes its start to the Robert Wood Johnson Foundation, which funded a 2010 year-long trial in which 105 doctors shared chart information with some 19,000 patients in Boston, rural Pennsylvania and Seattle. The experiment found that reading notes helped patients "feel more in control of their health and health care." RWJF funded additional efforts to develop the idea and, overall, has given more than $8 million in grants to Beth Israel Deaconess Medical Center for work to develop OpenNotes. 

In 2015, other funders got behind the OpenNotes movement, including the Commonwealth Fund, the Gordon and Betty Moore Foundation, the Peterson Center on Healthcare, and the Cambia Health Foundation. 

Some state funders are also looking to foster the spread of OpenNotes. The New York State Health Foundation, or NYSHealth, has an open RFP right now for grants of up to $100,000 for up to 10 hospitals that are willing to share doctors' notes with patients.  

These grants are offered as part of NYSHealth's program on empowering healthcare consumers, which is a big focus right now among many health funders, as we've reported often. The foundation explains that this grantmaking aims to increase "consumers’ and patients’ choice and control." It sees enabling patients to access their own notes as a key to such empowerment. 

If OpenNotes sounds like a new app or a healthcare data platform, it's really not. New York hospitals and healthcare systems can incorporate OpenNotes into patient portals, if those exist. A simple printout of the doctor's notes from a visit will suffice, too, because this work isn't about a technology.  

Patients and family members often do their best to take notes during a visit and ask questions, so OpenNotes is a backup in case they missed anything. Patients overwhelmingly use OpenNotes when it's available, and they like it. The burden on the doctor is minimal, and research has found that 80 percent say it doesn't create more work for them. 

If NYSHealth can advance the use of OpenNotes in New York, it will be another important gain for a patient empowerment movement that keeps gaining steam. That philanthropy has played a decisive role in scaling OpenNotes is a reminder that even in a sprawling $3 trillion healthcare system, strategic investments by comparatively tiny funders can have significant effects.