Tom Delbanco, M.D., MACP, and Jan Walker, R.N., M.B.A.
Have you ever wondered what the doctor is writing in your chart or your loved one’s chart during each office visit? Did he make note of what you said? Did he write down something important that you didn’t hear, and, therefore, won’t be able to act upon? You may not have to wonder much longer.
We are on the faculty at Harvard Medical School and Beth Israel Deaconess Medical Center in Boston and we are examining what may happen when patients and their families are invited to read their doctors’ notes. Our theory is that connecting both patients and their caregivers more effectively with the healthcare process should improve care. Our project, “OpenNotes,” may prove pivotal to such progress.
What many patients may not realize is that they have the right to review their medical records, including the notes doctors write during or after an office visit. However, that rarely occurs. Generally, patients don’t ask, and we in the health professions don’t offer. With OpenNotes, a project supported by the Robert Wood Johnson Foundation’s Pioneer Portfolio and two other donors, doctors use a secure Web site to invite patients to review their visit notes. We believe that this approach toward increased transparency makes sharing the notes we write easy and a matter of course.
Since 2010, we have worked with primary care doctors in three diverse, major health centers in Massachusetts, Pennsylvania, and Washington to invite patients to read their visit notes online. Before the project began, we asked 170 doctors and 38,000 patients about what they anticipated from patients viewing their doctors’ visit notes. We learned that patients were enormously interested and optimistic about the idea, regardless of age, education level, or health status. And as one might expect, many anticipated sharing their notes with family, friends, and other health professionals. Just image how helpful this practice might be to caregivers as they struggle with miscommunication, shifting memories, and a myriad of frequently overwhelming medical and social challenges.
Shared visit notes can be an incredibly powerful tool for a son or daughter helping an elderly parent cope with illness, such as cancer or heart disease; a husband or wife helping a spouse manage a chronic condition or disability; or a parent caring for a child with special needs. Reading notes can help patients and family caregivers understand the rationale behind different parts of the treatment plan and can enable caregivers to be more effective in helping family members adhere to the plan, including taking medications more effectively. It can help them coordinate care and make sure important medical information is communicated across providers and healthcare settings. And another set of eyes actively reviewing the notes may also help prevent mistakes. While the patients in our study read their notes online, patients and caregivers would get the same benefits from reading paper copies of their visit notes, which can be requested from the doctor.
We are now evaluating the experiences of the patients and doctors participating in our study and expect to publish our results in the summer of 2012. How did the doctors react? Did patients take better charge of their care? Did the medical language in doctors’ visit notes prove confusing or worrisome? Were patients and their caregivers able to get past the terminology and shorthand doctors use? Are doctors learning to change what they write? Should we limit the use of certain medical terms and abbreviations so as not to confuse or concern our patients, and, if so, how should our notes evolve? Clearly, there are opportunities for clearing up confusion and misunderstanding!
We view the idea of sharing medical notes as a new “medicine,” one whose benefits will far outweigh potential adverse side effects. We hope to find evidence that will make this simple but important intervention a routine part of care. We encourage you to ask your doctor for copies of your visit notes and stay tuned for our final results.
You can learn more about OpenNotes by visiting our Web site at http://www.myopennotes.org/ or following us on Twitter @myopennotes.
Dr. Delbanco and Ms. Walker, the project leaders for OpenNotes, are on the faculty at Harvard Medical School and Beth Israel Deaconess Medical Center.
Read Suzanne Mintz’s blog post about OpenNotes at http://rwjfblogs.typepad.com/.