The Health Insurance Portability and Accountability Act of 1996 (HIPAA) gives patients the right to inspect, review, and receive a copy of their medical records, including doctor’s notes, held by health plans and health care providers. Accessing those records can take time and the process can be a hassle, so most patients don’t bother. Yet patients often have a hard time remembering the details of their medical diagnoses and care instructions after leaving the doctor’s office, especially when there is a complex diagnosis, stressful news, or when the patient has cognitive issues. Electronic health records (EHRs) enable doctors to share their notes with patients the push of a button. Most health systems and physician practices have been reluctant to use that capability, but according to a recent Modern Healthcare article, more and more are using EHRs to make it easy for patients to access their doctor's notes.
For example, a patient who was diagnosed with multiple sclerosis three years ago, which has impaired her physical and cognitive abilities, has trouble remembering what was said during counseling sessions with her therapist and relaying her doctor’s care instructions to family members. Now she can log in to her online patient portal through her hospital, Beth Israel Deaconess Medical Center in Boston, and read her doctor's notes to fill the gaps in her memory. The hospital’s online portal lets patients “read the unedited write-up of their visit, complete with candid observations and hypotheses that historically were hidden from patients,” per the article. This patient also sends the notes to one of her doctors who is unaffiliated with her hospital to update him on her latest lab results. And she shares her therapist's notes with her sister to help her understand the emotional component of this patient’s personal battle against MS.
Beth Israel is one of a growing number of U.S. health systems and physician practices that are simplifying patients’ access to their physicians’ notes. Those who are sharing doctor’s notes with patients “view the practice as another step toward achieving full transparency in healthcare, one that builds on opening up access to lab results and X-ray images and helps patients get more involved in their own medical care,” per the article.
Many doctors are resistant to the idea of automatically sharing their notes with patients, fearing that medical terms and jargon may “confuse, alarm or even offend” patients, leading to “an avalanche of patient phone calls and questions.” Some physicians are wary about malpractice lawsuits and cybersecurity breaches. But for the most part, once the practice is implemented, those concerns fade. At Sutter Medical Foundation in Sacramento, for example, which releases about 150,000 notes each month from its 800 clinicians, doctors were skeptical about the prospect. But according to its chief medical officer, “many clinicians said they forgot we even went live because there have been no negative outcomes.”
The national note sharing initiative, OpenNotes, began in 2010 as a pilot program funded primarily by the Robert Wood Johnson Foundation to explore how sharing doctors’ notes might affect health care. More than 100 primary care physicians at Beth Israel, Geisinger Health System based in Danville, Pennsylvania and Harborview Medical Center in Seattle shared their notes with 20,000 patients as part of the 12-month study, which found that “opening up visit notes to patients may make care more efficient, improve communication, and most importantly may help patients become more actively involved with their health and health care,” according to the OpenNotes website. Today, more than 50 providers—including not only Beth Israel, Geisinger and Harborview but also other prominent health systems such as Stanford Medical Center, Mayo Clinic, Cleveland Clinic, the University of Texas MD Anderson Cancer Center and the Department of Veterans Affairs—are providing nearly 12 million patients with access to their physician notes. In December 2016, the Robert Wood Johnson Foundation, Cambia Health Foundation, Gordon and Betty Moore Foundation, and Peterson Center on Healthcare jointly announced $10 million in new funding to spread access to clinical notes to 50 million patients nationwide.
Automatic access to doctor’s notes empowers patients and puts them at the center of their care. According to the Modern Healthcare article, participating health systems say patients “trust their doctors more, ask better questions, and stick to the instructions and medications prescribed…The notes also open up the opportunity for better two-way communication between doctor and patient.”