From Zero to 50 Million
It’s been ten short years since the “OpenNotes” experiment was launched in three major hospital systems in Massachusetts, Pennsylvania, and Washington. That pilot began with 105 Primary Care Providers (PCPs) and about 13,000 patients. Organic spread of the concept has catapulted usage across the country and across specialties so that today over 50 million patients have access to their doctors’ notes. Even though the interoperability rules official start date has been delayed until April 5, 2021, open notes are now the law of the land. The rules specifically require the sharing of progress notes with patients.
The original pilot was designed to assess how concerns expressed by providers and patients would play out in real life. At the beginning of the study, researchers cited physician concerns about impact on their workflow, as well as increasing patient confusion and anxiety. They also reported that patients were worried about burdening or undermining trust with physicians, and about the privacy and security of their health information.
The results of that initial pilot were published in the Annals of Internal Medicine in 2012. It revealed enthusiastic support from patients, generally positive impressions of providers, and relatively few drawbacks. Nearly 99% of patients wanted continued access to their visit notes, and nearly 90% said that open notes would be a factor in choosing a future doctor or health plan. Of the concerns noted prior to the study all but one proved to be of minor significance. One third of patients did report concerns about the security and privacy of their information. Ironically, 40% of patients reported sharing their notes with someone else.
A subsequent study involving about 34,000 patients in the Veteran’s Administration system in 2014 showed similar results. Both studies revealed very positive results for patients, both in terms of how highly they valued access to their medical notes as well as the benefit to their health. They reported increased understanding and compliance with treatment plans. These studies also demonstrated that the concerns of providers regarding increased time and workload as well as increased confusion and anxiety for patients were largely unfounded. Participating providers reported very modest actual impact on their practice workflow. Patient anxiety and confusion were rarely reported.
Seven years after the original pilot, a follow up study of the same three delivery systems demonstrated sustained benefits congruent with the findings of the initial study. In their conclusion, the authors noted that, “…patients find note reading very important for their health management and share their notes frequently with others. Patients are rarely troubled by what they read, and those traditionally underserved in the United States report particular benefit.”
Not Just for Primary Care
Looking beyond the pioneering work in primary care, a September 2020 article in Lancet discussed the impact of open notes in oncology. Though oncologists had similar concerns to PCPs, these too proved to be unfounded, and the results from the patients’ perspective were impressive. Ninety-one percent reported learning important information that they had missed during their visit. Even greater percentages reported a better understanding of their diagnosis, the treatment risks, and potential side-effects.
The Future is Now
The government has given providers another five months to achieve compliance with the interoperability rules. For those that have not yet implemented open notes, these studies offer both reassurance and guidance that should prove useful. If done well, sharing notes with patients can strengthen their relationship with their provider and help build the knowledge and motivation they need to better manage their own health.