Doctors on Open Notes: “It was easier than expected”.

Open Notes Investigators Suzanne Leveille, Jan Walker & Tom Delbanco at Beth Israel Deaconess in Boston

We’ll look back on this day as a historic turning point in the transparency of medical records, moving toward fully sharing notes with patients. Open Notes, a research study at 3 large medical systems, shared their results. Findings are momentous: a WIN for patients and a NO LOSE for providers.

It’s been 40 years since Shenkin and Warner predicted, in the New England Journal of Medicine, that patients given “complete and unexpurgated copy of all medical records, both inpatient and outpatient” would enhance patient autonomy, improve patient-physician relationships, and serve as an educational tool (no access to this 1973 paper!). With Open Notes, we have substantial evidence that patients benefit and clinical fallout doesn’t happen.

Congratulations to Tom Delbanco, Jan Walker and colleagues for their dedication and effort to pull off a 3-site study. Among over 13,000 patients, almost all opened their notes at 2 sites and half did so at 1 site. Patients better understood their health condition, were more prepared for visits and felt more in control of their care. Patient activation happens. Providers, many who were skeptical about patient benefits, continued to underestimate these benefits even after 1 year. Why? Because they didn’t know when patients were reading their notes! Only 1 out of 5 patients talked to their doctors about the notes! Most importantly, providers were less likely to say their work increased. The authors even looked at secure email volume before and after: no change.

So, it’s a no brainer for patients. But for providers, too. Some favorite quotes from the paper:

When asked about the most difficult aspect of open notes, the most common comment among the 77 out of 104 responding PCPs was that nothing was difficult and that they experienced no changes in their practice.

Although several doctors acknowledged fears about additional time burden and offending or worrying patients, they wrote that these concerns did not materialize. Some commented on the extra time needed for writing, editing or explaining notes to patients. Among them, some framed such efforts as learning ‘better documentation – a good thing.’

In a post 2 years ago, I thought Open Notes would be a Slam Dunk. How my predictions fared, based on Open Notes results:

1. Once patients see their notes, they like access. 99% want to continue.
2. Medical jargon doesn’t get in their way. >90% were NOT confused or worried.
3. Some content surprises but people value it. PENDING study of patient comments.
4. Many say notes are wrong and want corrections. 60% want to add comments.
5. Seeing notes helps manage problems better. >70% reported better self-care.
6. It’s uncommon for a person to be distraught. Only 1-2% felt offended.
7. Many feel more prepared for in-person visits. 69%-80% agreed.

I’ve been studying open notes at the Veterans Health Administration for the past few years. The first version of the My HealtheVet PHR gave patients access to all notes. My research team and I just submitted our results for peer review; our findings fully support and complement the Open Notes study. It’s a really exciting time for participatory medicine, re-designing health records, and the journey toward open notes for Veterans & family by expanding Blue Button. Let’s get going: it’s gonna be awesome.

The Health Care Blog: Robert Wood Johnson Foundation’s Steve Downs – Open Notes Results Are In for Participatory Medicine: OpenNotes: The results are in. GREAT news for patient engagement.
Ted Eytan: Open Notes results are in…

One thought on “Doctors on Open Notes: “It was easier than expected”.

  1. Sherry Reynolds @Cascadia

    We have reached the tipping point in moving the conversation away from demands for data to one where patients are part of their own care team..

    At Stanford MedicineX for example this last weekend the patients were in fact treated like honored guests from beginning to end – .. rooms were set aside for them to stay healthy, their costs were covered, their voices where heard.

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