Twenty years ago Sunday, President Bill Clinton signed legislation that profoundly changed health care in the United States: the Health Insurance Portability and Accountability Act (HIPAA). Much of the law focused on protecting insurance coverage for people who change jobs, simplifying standards for health care data, and establishing rules that protect the privacy of Americans’ health care information. But HIPAA also paved the way for better, more open communication between doctors and their patients.
Before August 21, 1996, it was a huge hassle for most people to see their medical records — if they could see them at all. A grab bag of state laws governed access to this often useful information. While some states, like Massachusetts, had passed laws that protect the right of individuals to obtain copies of their medical records, such a right was not consistent across the country. In some states, you needed to file a lawsuit to see your medical records. Others required you to show “good cause.” HIPAA basically said that every US resident, with very few exceptions, has the right to see his or her medical records.
What HIPAA didn’t do was make it easy to see them.
For years, medical records were kept on index cards or paper. They included dates of visits, diagnoses, medications prescribed, and the like. They also include the doctor’s notes from each visit. These information-rich documents served to remind doctors about their patients and what was discussed at each visit, summarized next steps, and more. Ideally, they told the patient’s story during times of health and illness.
Getting hold of your records meant going to the doctor’s office or hospital, paying a visit to the records department, and then humbly requesting your information and agreeing to pay the copying fee. It could take days or weeks.
The development of electronic medical records made possible a simpler way to share information between doctors and patients. Boston’s Beth Israel Hospital (as it was known then) was one of the first hospitals to build an electronic medical record system. Doctors dictated their notes or typed them into the database, and these notes became part of the record. And early on, one of us (T.D.) would often print out copies and mail them to patients.
The creation of password-protected patient portals represented an important next step. It enabled a two-way electronic exchange of information between patients and their providers. Portals initially let patients look up lab results, refill medications, schedule appointments, or maybe even send secure emails to clinicians. Many doctors initially resisted such change, warning that patients wouldn’t be able to understand lab results or would be deluging them with emails. Neither came true.
But an important part of the medical record, the note, remained hidden from patients’ view. Traditionally, doctors “owned” such notes, using them as reminders, as vehicles for sharing information with colleagues and, increasingly, as ways to justify the bills they rendered. But we felt that doctors, nurse practitioners, physical therapists, and other clinicians could take advantage of an exciting opportunity: Why not share such notes with their patients? After all, good notes can accurately pull together the patients’ stories, assessing their bodies, their minds, and a variety of intermingling needs. The Institute of Medicine agreed, urging society to see the note as a living, interactive document shared between patients and providers.
We hoped that by sharing such information, patients would engage more actively in their care, better remember what was discussed during the visit, follow more closely their plan of care, do a more effective job of sticking to their medications, take more control of their care, and potentially pick up mistakes their clinicians may have made. Any or all of these would improve the quality and safety of care and, over time, help hold down costs.
In 2010, we took a step toward making the clinical note part of the doctor-patient conversation by conducting a relatively large-scale experiment that we called OpenNotes, in which doctors invited their patients to see their notes electronically. We started with 105 doctors and more than 20,000 patients at Beth Israel Deaconess Medical Center, the Geisinger Health System in Pennsylvania, and Harborview Medical Center, the safety net hospital in Seattle. We didn’t send the patients a multipage educational email on how to read the clinical note, nor did we spend hours educating doctors on writing notes that their patients might see. Instead, we basically flicked the switch that kept patients from seeing their notes, and then we evaluated what happened.
What we learned from this yearlong demonstration far exceeded our expectations. More than 80 percent of the patients read at least one note and, whether or not they chose to read their notes, 99 percent said the practice should continue. Among those reading notes, 70 percent of those completing surveys said they felt more in control, were better educated about their care, and were being more conscientious about taking their medicines. The latter finding was remarkable. Medication adherence has been a big issue in medicine for years. Doctors almost invariably overestimate how often patients take their medicines and underestimate how hard it is to take them. Improving patients’ medication-taking behaviors with something as simple as inviting them to read their notes was a mind-blowing finding. Even if these reports were a fivefold exaggeration, and only 15 percent of those reporting were indeed taking their medicines more effectively, OpenNotes was already worthwhile.
Here’s another telling example, characteristic of what excited us about many patients’ responses to reading what their doctors wrote. One user commented, “In his notes, the doctor called me ‘mildly obese.’ This prompted my immediate enrollment in Weight Watchers and daily exercise. I didn’t think I had gained that much weight. I’m determined to reverse that comment by my next check-up.”
But changing the way clinicians practice was, and is, a challenge. Some feared that sharing notes might diminish valuable face-to-face communication with patients, that patients wouldn’t be able to understand the medical language used in notes, and even that sharing notes would raise more questions for patients than provide answers. However, as the practice spread, these fears were rarely realized, and today arguments about content and other contentious issues pale in comparison to the benefits of the open communication, trust, and patient engagement that increasingly characterize the experience for both clinicians and patients. This comment from a physician seems to capture their collective experience: “My fears: Longer notes, more questions, and messages from patients. In reality, it was not a big deal.”
Since completing the demonstration project and conducting a lot of follow-up research, we are now working to bring the potentially transformative experience of reading medical notes to as many people as possible. OpenNotes, funded solely by philanthropy, has already brought clinician notes to 10 million Americans. We are aiming for 50 million by the end of 2018. We really want this practice to become the standard of care.
HIPAA is landmark legislation that has benefited many average Americans. But it was written before anyone had fully realized the potential for electronic medical records. Its principles now need to evolve to reflect new and different demands. For example, now that it is possible for patients to add information to their medical records and notes, who owns the medical record is becoming an open question. And as patients move toward generating records with their providers, how should matters be resolved when a patient and doctor disagree over the contents of a note?
Creating a two-way conversation between patients and providers may be highly important for improving the quality and costs of care, patient safety, and patient satisfaction. We are increasingly convinced that expanding these conversations will help patients become far more active partners in their own health care.
Jan Walker, RN, is cofounder of OpenNotes and assistant professor of medicine at Harvard Medical School and Beth Israel Deaconess Medical Center. Catherine L. Annas, JD, is a quality improvement project manager at Beth Israel Deaconess Medical Center. Tom Delbanco, MD, is cofounder of OpenNotes and professor of general medicine and primary care at Harvard Medical School and Beth Israel Deaconess Medical Center.