The OurDiagnosis (OurDX) Project
Relevant publications
Frequency and Types of Patient-Reported Errors in Electronic Health Record Ambulatory Care Notes JAMA Network Open (2020)
Tackling Ambulatory Safety Risks Through Patient Engagement: What 10,000 Patients and Families Say About Safety-Related Knowledge, Behaviors, and Attitudes After Reading Visit Notes Journal of Patient Safety (2018)
Improving Diagnosis in Health Care National Academies Press (2015)
The frequency of diagnostic errors in outpatient care: estimations from three large observational studies involving US adult populations BMJ Quality & Safety (2014)
Engaging patients and families in the diagnostic process
Inaccurate and delayed diagnoses are common, harmful, and costly. (Improving Diagnosis in Health Care, National Academies Press) Diagnostic failures are associated with as many as 80,000 premature deaths every year in U.S. hospitals, and estimates suggest that as many as 12 million adults experience a diagnostic error annually in outpatient settings in the United States. (BMJ Quality & Safety, Society to Improve Diagnosis) However, patient and family experiences with breakdowns in diagnosis are rarely heard, understood, or measured.
Finding the explanation for a patient’s symptoms or signs (the diagnosis) relies on patients and clinicians working together — including getting the right details of the medical history, understanding the patient’s main concern, and clear communication and follow up.
Patients notice errors in their notes, and they find some that their doctors feel are serious.
Relevant publications
Empowering patients and reducing inequities: is there potential in sharing clinical notes? BMJ Quality & Safety (2020)
Patients as diagnostic collaborators: Sharing visit notes to promote safety and accuracy Diagnosis (2019)
Patients Contributing to Their Doctors’ Notes: Insights From Expert Interviews Annals of Internal Medicine (2017)
Gathering information from the patient
OurDiagnosis—also known as “OurDX”—is an online tool that solicits patient and family priorities, symptoms and health concerns, and searches for potential diagnostic breakdowns in ambulatory care.
This research aims to:
- Design and test an intervention inviting patients to contribute information that may a) help clinicians reach more timely and accurate diagnoses, and b) communicate about them more clearly with patients and families.
- Draw on patient and family experiences to develop a patient-centered framework for understanding and measuring diagnostic breakdowns.
Relevant articles
OpenNotes Awarded Grant to Test Innovation to Improve Diagnosis and Reduce Disparities Society to Improve Diagnosis in Medicine (2020)
OurDiagnosis (OurDx) in Spanish
In September 2020, OpenNotes received a separate grant from the Society to Improve Diagnosis in Medicine (SIDM) to expand OurDX for use by individuals with limited English proficiency (LEP). In partnership with the Boston Children’s Hospital Spanish Collaborative, OpenNotes will develop and test a Spanish version of the intervention.
In Conversation With… Sigall K. Bell, MD Patient Safety Network, AHRQ (2018)
OurDiagnosis project team
Principal Investigator
Sigall K. Bell, MD, Director of Patient Safety and Discovery at OpenNotes, Associate Professor of Medicine, Harvard Medical School, Beth Israel Deaconess Medical Center
Co-Investigators
Fabienne Bourgeois, MD, MPH, Pediatric Hospitalist and Physician Lead of Consumer Informatics at Boston Children’s, Assistant Professor of Pediatrics, Harvard Medical School
Catherine DesRoches, DrPH, Associate Professor of Medicine, Harvard Medical School, Beth Israel Deaconess Medical Center, Executive Director, OpenNotes
Stephen Liu, MD, MPH, Internist and Associate Professor of Medicine, Geisel School of Medicine. Dartmouth Hitchcock Medical Center,
Eric Thomas, MD, MPH, Director of UT Houston-Memorial Hermann Center for Healthcare Quality and Safety. Associate Dean for Healthcare Quality
Research Assistant
Kendall Harcourt, MPA, Beth Israel Deaconess Medical Center
Patient Advisor and Patient-Researcher
Liz Salmi, Senior Strategist, OpenNotes, Beth Israel Deaconess Medical Center
Patient and Family Engagement Experts and Collaborators
Sara Toomey, MD, MPhil, MPH, MSc, Assistant Professor of Pediatrics, Harvard Medical School, Pediatrician, Boston Children’s Hospital
Lisa Rubino, MBA, Director of Patient Experience, Boston Children’s Hospital
Partner Organizations
OurDX is in the pilot stage in selected practices at Boston Children’s Hospital and Dartmouth Hitchcock Medical Center (Lebanon, New Hampshire)
Related article
Answering the call to engage patients and families in the diagnostic process AHRQ (2019)
Funder recognition
Our Diagnosis is supported by the Agency for Healthcare Research and Quality of the National Institutes of Health under award number R01-HS27367-01. This content is solely the responsibility of the researchers and does not necessarily represent the official views of the National Institutes of Health.
Except where otherwise noted, the content by OpenNotes is licensed under a Creative Commons Attribution 4.0 International License.
You may be interested in
Care Partners
Patient Family Advisory Council (PFAC)
OurNotes: Patients and Clinicians Writing Notes Together
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