Shared medical notes can improve the processes and outcomes of care. Health care advocates have argued this for decades. Meanwhile, government policies help define how much access and control you have when it comes to medical records. Over the last 15 years, OpenNotes has been researching what happens when these policies are put into practice.
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.”
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.”
— A Patient’s Bill of Rights
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.”
— The Computer-Based Patient Record: An Essential Technology for Health Care
The Health Insurance Portability and Accountability Act was 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.
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.
The American Recovery and Reinvestment Act (ARRA) and the Health Information Technology for Economic and Clinical Health Act (HITECH) are introduced. HITECH included the concept of “electronic health records – meaningful use” (EHR-MU), which required health systems to offer patient portals and interoperable electronic health records throughout the United States.
Beth Israel Deaconess Medical Center (Boston, MA), Geisinger Health System (rural Pennsylvania), and Harborview Medical Center (Seattle, WA) 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.
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 U.S. Department of Veterans 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.
The OpenNotes Patient Safety Initiative is launched with funding from CRICO/Risk Management Foundation of Harvard Medical School affiliates. 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 patients, families, and clinicians.
Beth Israel Deaconess Medical Center launches a pilot to invite patients to view notes written by their psychotherapists. Continued research and implementation 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.
The OpenNotes Northwest Consortium is formed to support adoption and drive implementation of open notes across Oregon and Washington. 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 are formed across California, New York, and Wisconsin. Later, OpenNotes consortia form around topics of specific interest including mental health, oncology, patient/family involvement, pediatrics/adolescents, and clinical documentation quality.
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.
The Gordon and Betty Moore Foundation, Peterson Center on Healthcare, and 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.
Catherine M. 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.
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.
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.
New learning collaboratives form focused on shared access to patient portals for care partners and timely access to test results (“open results”).
Beginning April 5, 2021, all U.S. healthcare systems are required to electronically share clinicians’ visit notes with patients at no charge. The program rule on Interoperability, Information Blocking, and ONC Health IT Certification—which implements the 21st Century Cures Act passed by a bipartisan Congress in 2016—requires U.S. patients be provided access to all the health information in their electronic medical records without charge by their healthcare provider. As a result made the concept of open notes the “law of the land.”
AI is introduced to the general public and changes every professional sector. Large language models (LLMs) offer patients the opportunity to query their medical information between doctors’ visits and better understand their medical records. However, there are risks of responses that are inappropriate, inconsistent, or incorrect.
The OpenNotes Lab is launched as an innovation hub at the intersection of clinical documentation, patient engagement, and artificial intelligence. The Lab is exploring how AI can enhance patient-clinician relationships and improve care delivery, and a new learning collaborative is launched for using AI in language translation.
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