While patients technically have the right to access their medical records under HIPAA, including doctors' notes, actually obtaining the data can be a difficult process. But a growing number of hospitals, physician practices, and health systems now allow patients to download and read the notes at their leisure, and even send them to other care providers to loop them in on recent lab results, diagnoses, and more. According to Modern Healthcare, providers are now sharing notes with nearly 12 million patients .
Hospitals, EHR vendors take the lead on facilitating access
For example, patients of Beth Israel Deaconess Medical Center can download and read the unedited notes that include a write-up of the visit, any test results, and even candid observations that patients are not normally privy to.
Sutter Medical Foundation releases about 150,000 notes monthly to patients from 800 clinicians. According to CMO Michael Conroy, about 15 percent of patients read the notes, and the number is increasing every month. "We felt it was a breakthrough in empowering patients," he said.
UCHealth, which already shares notes from about 3,000 physicians with patients, plans to allow its mental health care providers to make their notes available to patients in a few months. According to CT Lin, UCHealth's chief medical information officer, patients have said access to notes helps them feel better understood by their physicians. "For a patient to make that statement, 'my doctor understands me,' has everything to do with their better downstream outcome of their medical treatment," Lin said.
Several EHR vendors are also facilitating patient access to provider notes by making note-sharing features available in their systems at no additional cost. Epic and Cerner already implemented the feature, which lets users share notes without interrupting their workflow, and other venders, such as eClinical Works, plan to add a similar feature in the future.
Provider pushback—and putting those concerns to rest
Despite the relatively easy implementation, the move toward sharing notes has caused concern among some providers. For instance, Conroy said there was some physician pushback before Sutter implemented its system. But after the notes were made available to patients, "many clinicians said they forgot we even went live because there have been no negative outcomes," Conroy added.
That pushback is fairly normal, Livingston writes. "[Providers] worry that easy access to their notes will lead to an avalanche of patient phone calls and questions," she explains. "They fear the jargon and medical terms will confuse, alarm, or even offend patients. Some are wary about malpractice lawsuits and cybersecurity breaches that could put sensitive patient information in the wrong hands."
But some research has found that isn't the case. A 2010 study looked at 105 primary care physicians from Beth Israel, Geisinger Health System, and Harborview Medical Center who released their notes to about 20,000 patients under a movement called "OpenNotes." After assessing a year's worth of data, the researchers found that most of the fears regarding patient anger or confusion never materialized, and no physicians stopped sharing notes.
In fact, some studies have found that patients who read doctors' notes are more likely to trust their doctors, ask informed questions, and adhere to their medication schedule. There's also a practical benefit: Patients can more easily and comprehensively transition their care between providers. And the notes can be particularly helpful for patients who have trouble remembering their care instructions.
But some stakeholders say further research is needed. While the American College of Physicians' Medical Informatics Committee has said doctor note sharing can be beneficial, it believes further studies are needed before the practice is implemented on a broad scale. One such study is already underway—the Robert Wood Johnson Foundation in December 2015 partnered with three other groups to expand OpenNotes to 50 million patients across the country, with the goal of assessing how such access affects patients and physicians (Livingston, Modern Healthcare, 12/31/16).
Help patients take an active role in their care
Even the best care won't result in strong outcomes unless patients are ready and willing to follow care recommendations, make necessary lifestyle changes, and play an active role in managing their own care.
That's why it's crucial that frontline clinicians have the skills to tap into patients' motivation to change. Our toolkit gives managers the resources they need to help clinicians do just that.