For decades, a growing number of health care advocates have argued that shared medical records can improve the processes and outcomes of care. OpenNotes reflects many of these ideas. It’s a movement fifty years in the making.
Offering Every Patient Access
A New England Journal of Medicine article entitled “Giving Every Patient His Medical Record: A Proposal to Improve the System,” argues that “Four serious problems (maintaining high quality of care, establishing mutually satisfactory physician/patient relations, ensuring continuity and avoiding excessive bureaucracy) could be alleviated, in part, if patients were given copies of their medical records.”
A New Era of Transparency
The American Hospital Association adopts a Patient’s Bill of Rights, emphasizing that “activities must be conducted with an overriding concern for the values and integrity of patients.” The Bill fuels the patient rights movement, outlining not only rights but also steps patients can take to become more active in their own care.
“Patients are responsible for informing their physicians and other caregivers if they anticipate problems in following prescribed treatment.”— Excerpted from A Patient’s Bill of Rights
Rise of the Electronic Medical Record
The Institute of Medicine (IOM) releases a report, “The Computer-Based Patient Record: An Essential Technology for Health Care.” It makes a strong case for electronic health records, saying they are essential to improving health care quality and safety.
“Recent experience has shown that access to data and information at the point of care and the ability to analyze data for management and research purposes improve the quality and reduce the costs of care.”— From The Computer-Based Patient Record: An Essential Technology for Health Care
HIPAA Changes the Game
The Health Insurance Portability and Accountability Act is enacted by Congress and signed into law by President Clinton. An important component of this complicated act is the establishment of national standards for Electronic Health Care mandating that patients nationwide have the right to inspect, review, and receive copies of their medical records. This eliminates a critical barrier to access and eases the path toward OpenNotes.
Patient Portals Provide Online Access to Health Information
Health systems and technology companies begin to develop and adopt secure online websites, called patient portals. They allow patients to access some of the personal health information in their medical record. Using the portals, patients can read information such as medication lists and test results, and many can send secure email to their health care team. But the notes clinicians write after a visit remain hidden from the patient’s view.
Salzburg Seminar: “Nothing About Me Without Me”
Health professionals, patient advocates, artists, reporters, and social scientists from many nations come together to build a vision for improved access and shared decision making in health care. They create PeoplePower, a fictional country where patients and health care professionals contribute to patients’ medical records, notes are shared, and hospitals continuously solicit feedback to improve quality. This work becomes an important foundation for the OpenNotes movement.
Beth Israel Deaconess Medical Center in Boston, Geisinger Health System in rural Pennsylvania, and Seattle’s Harborview Medical Center launch an exploratory study. Primary care doctors invite their patients to read their notes via secure online portals. The study, funded by the Robert Wood Johnson Foundation, examines the effects of sharing notes on both patients and doctors.
The First Study Results are In
Results of the 2010 study are published in the Annals of Internal Medicine. The big takeaways: doctors report little change in workload, and patients overwhelmingly approve of note sharing as a practice. Few are worried or confused by their notes. Instead, they report that reading notes helps them feel more in control of their health and health care. In response, several health systems make plans to adopt OpenNotes.
The VA Shares Notes Systemwide
The U.S. Department of Veteran’s Affairs introduces an enhanced version of its Blue Button personal health record. The addition of OpenNotes is a major part of the upgrade. Veterans receiving care through the VA and authenticated on its health portal are now able to review and share the notes written by their health care team.
Patient Safety and Two-way Communication
The OpenNotes Patient Safety Initiative is launched with funding from CRICO/Risk Management Foundation of the Harvard Medical Institutions. The work investigates the potential effects of note sharing on patient safety. OpenNotes researchers prepare to pilot an online reporting tool that invites patients to identify errors and inaccuracies and provide other feedback about their notes.
Expansion into Mental Health
Beth Israel Deaconess Medical Center launches a pilot that invites patients to view notes written by their psychotherapists. Advocates believe that note sharing can serve as an important tool in mental health care and reduce the stigma associated with mental illness. Several health systems throughout the country commit to opening mental health notes.
Kaiser Permanente Northwest, Legacy Health, Oregon Health and Science University, The Portland Clinic, Salem Health, OCHIN, Providence Health System, Peace Health Medical Group, and Samaritan Health Services come together to support adoption and drive implementation of OpenNotes. As the first regional group to collaborate, they demonstrate striking leadership by working together on behalf of patients.
Looking to the Future with OurNotes
The OpenNotes team receives support from the Commonwealth Fund of New York to develop OurNotes, an initiative promoting active patient engagement in health and illness by inviting patients to contribute to their own electronic health records.
Moore, Peterson, and Cambia Join RWJF
The Gordon and Betty Moore Foundation, the Peterson Center on Healthcare, and the Cambia Health Foundation join the Robert Wood Johnson Foundation and announce generous new funding to support innovation, research, and the goal of spreading OpenNotes to 50 million patients nationwide by 2020.
OpenNotes Reaches 10 Million
Cait DesRoches, DrPH, joins the OpenNotes team as the first Executive Director, and announces that 10 million Americans can now choose to read their medical notes securely online.
OpenNotes Continues to Spread
More than 12 million patients now have access to their notes, and at least 20 health systems plan to join the OpenNotes movement this year.