Shared medical notes can improve the processes and outcomes of care. A growing number of health care advocates have argued this for decades. Now, OpenNotes is putting this thinking into practice.
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 health record
The National Academies of Medicine (formerly the Institute of Medicine) 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 improves the quality and reduces 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 open notes.
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 limited 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 Global Seminar: “Nothing About Me Without Me”
Prominent 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. They adopt and publicize the principle, “Nothing About Me Without Me.” These words become an important foundation for the health transparency movement.
Beth Israel Deaconess Medical Center in Boston, Geisinger Health System in rural Pennsylvania, and Seattle’s Harborview Medical Center launch an exploratory study. 105 primary care doctors invite 20,000 of 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.
Publication of findings from the first openNotes study
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 open notes.
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 open notes is a major part of the upgrade. More than a million 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 pilot an online reporting tool that invites patients to identify errors and inaccuracies and provide other feedback about their notes. Results show that, when invited, one-quarter of patients and families identify potential medical documentation errors, half of which are considered “important” by the patients/families and clinicians.
Expansion into mental health
Beth Israel Deaconess Medical Center launches a pilot to invite patients to view notes written by their psychotherapists. Continued research and implemention at numerous sites across the U.S. and Canada show that reading online mental health notes indicates patient experiences are more positive than negative. Survey respondents agree that having open therapy notes is a good idea, and many recommend that it continue. Advocates believe that note sharing can serve as an important tool in mental health care and reduce the stigma associated with mental illness. More than 30 health systems throughout the U.S. are sharing mental health notes.
OpenNotes Consortia, Networks, and Learning Collaboratives
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 form the OpenNotes Northwest Consortium to support adoption and drive implementation of open notes. As the first regional group to collaborate, they demonstrate striking leadership by working together on behalf of patients. Following success in the Pacific Northwest, OpenNotes consortia have been launched in California, New York and Wisconsin, and formed around topics of specific interest including mental health, oncology, patient/family involvement, pediatrics/adolescents, and documentation.
Looking to the future with OurNotes
The OpenNotes team receives support from the Commonwealth Fund and Drane Family Fund to develop OurNotes, an initiative promoting active patient engagement in health and illness by inviting patients to contribute to their own electronic health records.
Five million people now have access to open notes.
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 open notes to 50 million patients nationwide by 2020.
OpenNotes reaches 10 Million
Cait DesRoches, DrPH, joins the OpenNotes team as its first Executive Director and announces that 10 million Americans can now choose to read their medical notes securely online.
Salzburg Global Seminar: Enriching and Charting the Patient-clinician Relationship
Supported by OpenNotes, 50 patients and health professionals form teams from 5 continents and 11 countries. Extending the PeoplePower vision elaborated in Salzburg 19 years before, they draw on new health information technologies and social media to design interventions facilitating fully transparent communication and active patient engagement.
OpenNotes continues to spread
More than 50 million patients in the U.S. and Canada have gained access to their notes. Adoption of this fundamental change in practice accelerates rapidly.
Federal law mandates Open Notes
Open notes will become national law in April 2021. New federal rules will offer all US patients electronic access to almost all notes written by clinicians in computerized medical records. The notes will be available at no charge.