Patients and doctors benefit from shared notes

When I joined the Ambulatory Practice of the Future (APF) as a first-year resident, I learned that the primary care clinic had an open notes policy: whatever we wrote about our patients could be seen by our patients through a secure online portal. It was a startling departure from medicine’s tradition of records shrouded in the secrecy of long, Latin-rooted words written in chicken scratch and kept out of patients’ reach by mounds of paperwork.

I liked the concept of open notes but wondered how it would play out. What would patients make of all the medical jargon? How could I be forthcoming in documenting, say, obesity or a personality disorder if I risked offending my unintended audience? The past year-and-a-half has convinced me that record transparency is worthwhile – even when balanced against the potential for discomfort. A recent article in the Annals of Internal Medicine shows how about one hundred primary care physicians (PCPs) and thousands of patients in Boston, Seattle, and Danville, PA came to the same conclusion.

In the “quasi-experimental” OpenNotes study, researchers based at Boston’s Beth Israel Deaconess Medical Center (BIDMC) invited more than 250 PCPs to use open notes with their 22,000-plus patients. At the start, they surveyed the doctors and the patients on how they felt about the open notes concept. The doctors were more likely than patients to report concerns about the impact of note sharing on patients: doctors worried that the notes would be more confusing than helpful, lead to more worries, or cause offense. About half of the doctors decided not to participate further in the study – the doctors who dropped out were more likely to predict negative consequences of shared notes on their practice (eg. more time spent writing notes, longer visits) than the doctors who stayed on.

The researchers tracked the participating doctors and patients over 12 to 19 months of using open notes. At the end of that period, they found that doctors’ concerns about their workload decreased considerably. Three-quarters of them reported no change in their practice workload. While up to 26% of doctors reported that they’d prefer not to continue with open notes, none of them actually opted out.

As for the patients, the researchers found that 11,800 of the 13,500 patients with available notes actually opened at least one of them. Of the almost 5,400 who then filled out a follow-up survey, 70-72% said they took better care of themselves, 77-85% better understood their health conditions, 77-87% felt more in control of their care, and 60-78% were more likely to take their medications as prescribed. Only 1-8% reported the notes caused confusion, worry, or offense. When the study ended, nearly 99% of patients wanted to retain access to their notes.

At APF, patient feedback about the open note model has been overwhelmingly positive as well. In contrast to my initial fears, note sharing has felt like a natural component of a practice devoted to patient-centered care. There may be some subtle differences between how I write my notes in clinic and in the hospital wards (where notes remain private): I use the same formal medical terms in both types of notes – after all, these documents are primarily used for billing and to communicate with other providers. But in my shared notes, I am more likely to spell out medical terms, in lieu of using acronyms, for ease of patient googling. I don’t shy away from noting substance abuse or possible cancer when the clinical situation demands it. But I make sure I’ve discussed the topic directly with the patient beforehand and, as up to one-third of the doctors in the BIDMC study reported, I’m more likely to err on the side of dry clinical-speak when documenting such socially and emotionally charged topics. Small price to pay for helping patients become more knowledgeable and involved in their care.

Sharing notes may also allow doctors and patients to communicate more effectively, leading to better care and fewer medical errors. A patient might alert us to an abnormal test result before we’ve seen it ourselves, preventing a missed or delayed diagnosis. Working together, we’re also more likely to catch medication errors: A colleague at APF tells me about a patient of his who discovered that the dosage typed on his pill bottle was different from the one documented in his note. Another patient stopped a medication prematurely before she consulted her health record and realized her mistake.

The open notes model has its limitations, of course. The approach doesn’t work for patients without computer access and may be problematic for those with severe mental illness or substance abuse issues (they were excluded from the BIDMC study). And uptake may be slow: the majority of health care practices in North America still don’t have electronic health records and even among those with the infrastructure for open notes, concerns about increased workload and patient impact might be hard to shake. But as we begin to realize the impact of direct patient engagement, note sharing seems a logical, and inevitable, endpoint in our search for better quality health care.