From humble beginnings in 2010 to more than 5 million patients nationwide currently, the OpenNotes initiative is gaining momentum as patients are being given unprecedented online access to the notes their clinicians write after a doctor visit, increasingly making believers of once skeptical physicians.

As the effort garners support from provider organizations across the country, Beth Israel Deaconess Medical Center (BIDMC) in Boston remains at the epicenter of research activities aimed at demonstrating that the sharing of visit notes with patients can improve overall safety and quality of care by ensuring the accuracy of clinician notes, while reducing medical errors and improving medication adherence.

Providing patients with “full and early access to their data” is a prerequisite, argues Sigall Bell, M.D., assistant professor of Medicine at BIDMC and Harvard Medical School, as well as director of patient safety and quality initiatives at the Institute for Professionalism & Ethical Practice at Boston Children’s Hospital. She believes that ambulatory care, in particular, presents some unique safety challenges and that the sharing of visit notes can go a long way towards fostering good communication between patients and doctors so that follow-up appointments and referrals, diagnostic tests and procedures, and prescribed medications are clearly understood.

Also See: Online Initiative Engages Patients by Sharing Physician Notes

“The vulnerabilities are often in the spaces between visits, even with something as simple as helping patients better remember their care plan based on reading what the doctor has written,” says Bell. “The data suggest that a big chunk of what happens in medical encounters is forgotten.”

She asserts that patients tend to remember physician instructions better when they are written rather than those that are verbally communicated. Bell is lead author of an article published in this month’s issue of The Joint Commission Journal on Quality and Patient Safety which concludes that OpenNotes has the “potential to connect patients and providers in new ways and to improve patient safety with a simple strategy that can be readily scaled up at relatively little cost.”

Although OpenNotes has been implemented in the form of secure online patient portals, leveraging multi-vendor electronic health record systems, according to Bell and other BIDMC researchers the initiative does not require sophisticated information technology but could be alternatively instituted by simply printing out a copy of the visit note for patients who might not have Internet access. However, there’s no doubt that health IT has been a technological enabler allowing the initiative to rapidly scale over the past five years.

“At the end of the day, OpenNotes is not a program or a software package. It is a philosophy, a decision, a commitment to transparency,” Bell exclaims.   

Past, Present, & Future

OpenNotes began in 2010 with a study that included more than 100 primary care doctors at three hospitals—BIDMC, Geisinger Health System in Danville, Penn., and Harborview Medical Center in Seattle—which invited 20,000 of their patients to read their visit notes through a secure website. A 2012 study published in the Annals of Internal Medicine found that patients frequently accessed visit notes, reporting clinically relevant benefits and minimal concerns, with virtually all patients wanting the practice to continue. At the same time, the authors of that article concluded that doctors experienced “no more than a modest effect on their work lives” and that OpenNotes seemed “worthy of widespread adoption.”

Fast forward to the present day. In putting together their August 2015 article, BIDMC researchers drew from five years of experience with OpenNotes, new survey data, and focus groups detailing key areas of patient safety and quality of care that might potentially benefit from more open communication between physicians and patients.

“A few mindful approaches to physician note-writing can help patients make the most of their notes without completely changing the way that doctors do their work and document,” advises Bell. “In terms of watering down the notes, I think it has been a real concern for some doctors but not typically what is happening. Important medical content can and should remain the same. Limiting jargon can help, but patients are resourceful and will look things up. On the flip side there’s a tremendous amount of positives that come from better engaging and educating patients in their care. There are ways that clinicians can write notes that patients can read that don’t require major overhaul.”    

While physicians express some concerns about sharing visit notes with patients, Bell and her co-authors observe in their article that “many agree that note transparency could improve patient safety and quality of care” and simultaneously that “despite considerable uncertainty about what constitutes an error to patients, physicians anticipate that patients will find nontrivial errors in their notes and may feel unprepared to react to such circumstances.”

To address these concerns, the article recommends setting appropriate expectations and mutual understanding between patients and providers “about what constitutes an error, patient and clinician education, institutional support, and new ways to communicate about mistakes.”

Bell and her colleagues are using this initial research to help guide work on a two-year study— The OpenNotes Patient Safety Initiative—funded by CRICO, the medical malpractice insurer and patient safety supporter of the Harvard hospitals. The project involves development and implementation of an online patient reporting tool linked to OpenNotes—among the first in the country—that will enable patients and their informal caregivers to provide feedback on their visit notes. 

According to Bell, BIDMC researchers have launched a prototype of the patient reporting tool with clinicians at HealthCare Associates, BIDMC's primary care practice. “Our preliminary data really supports the notion that patients are able to find, identify, and correct errors,” she adds.  Given their success with this pilot program to date, Bell says CRICO recently provided a second grant for the OpenNotes Safety Initiative to expand that work to Boston Children’s Hospital as well as more broadly at BIDMC.

In addition, earlier this year, BIDMC received a grant from The Commonwealth Fund to develop OurNotes, an extension of OpenNotes in which patients and physicians would ostensibly be able to “co-create” visit notes and agree on their content, which Bell says “could take this idea of partnership to the next level.” That grant will support work at five sites: BIDMC, Geisinger Health System, and Harborview Medical Center, as well as Group Health Cooperative in Seattle and Mosaic Life Care in St. Joseph, Missouri.

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