The OurDiagnosis (OurDx) Project
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 40,000- 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. (Society to Improve Diagnosis, BMJ Quality & Safety) 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. We believe that patients and families are vital diagnostic partners and can contribute this important information through coproduction of visit notes and the diagnostic process.
Patients have unique knowledge about themselves and they are the connecting thread between different healthcare encounters. They can identify errors in their notes, including some their doctors feel are serious. Patients and families need a systematic way to notify their healthcare team of changes or breakdowns that may otherwise go undetected.
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)
This research aims to:
- Draw on patient and family experiences to develop a patient-centered framework for understanding and measuring patient-reported diagnosis-related breakdowns.
- Design and test an intervention to co-produce diagnosis and visit notes, called OurDx. Using OurDx, patients and families are invited to contribute information electronically before the visit that may help clinicians reach more timely and accurate diagnoses. Patient and family contributions can also be used to co-generate the visit note, potentially decreasing documentation burden for clinicians.
Empowering patients and reducing inequities: is there potential in sharing clinical notes? BMJ Quality & Safety (2020)
Patients Contributing to Their Doctors’ Notes: Insights From Expert Interviews Annals of Internal Medicine (2017)
Inviting information from patients and families
OurDiagnosis—also known as “OurDx”—is an online tool that invites patients and families to indicate their visit priorities, symptoms and health concerns, and potential diagnostic breakdowns prior to their ambulatory visits. It is an expansion of “OurNotes” that focuses on the diagnostic process.
We created OurDx after development of a “Patient-Centered Framework” (PCF) for patient-reported diagnosis-related breakdowns. The PCF was derived from engagement of a multi-stakeholder advisory group and analysis of over 2000 patient reports of ambulatory breakdowns in 2 population-based surveys of over 25,000 patients in the US. We anticipated that using the PCF to inform OurDx design would help engage patients and families in diagnosis using concepts and terminology that resonated with their lived experiences.
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, we are developing and testing a Spanish version of the intervention — “Nuestro Diagnostico.”
OurDx project team:
Sigall K. Bell, MD, Director of Patient Safety and Discovery at OpenNotes, Associate Professor of Medicine, Harvard Medical School, Beth Israel Deaconess Medical Center
Fabienne Bourgeois, MD, MPH, Pediatric Hospitalist and Physician Lead of Consumer Informatics at Boston Children’s, Assistant Professor of Pediatrics, Harvard Medical School
Stephen Liu, MD, MPH, Internist and Associate Professor of Medicine, Geisel School of Medicine, Dartmouth Hitchcock Medical Center
Eric Thomas, MD, MPH, FACP, Director of UT Houston-Memorial Hermann Center for Healthcare Quality and Safety. Associate Dean for Healthcare Quality
Liz Salmi, Senior Strategist, OpenNotes, Beth Israel Deaconess Medical Center
Kendall Harcourt, MPA, Beth Israel Deaconess Medical Center
Nicholas Hart, Boston Children’s Hospital
Brianna Mahon, Dartmouth Hitchcock Medical Center
Multi-stakeholder Advisory Group and Statistical Team
Fabienne Bourgeois, MD, MPH
Catherine M. DesRoches, DrPH
Joe Dong, MS
Stephen Liu, MD, MPH
Patricia McGaffigan, RN, MS, CPPS
Long Ngo, PhD
Sandy A. Novack
James D. Ralston, MD, MPH
M. Suz Schrandt, JD
Sue Sheridan, MIM, MBA, DHL
Lauge Sokol-Hessner, MD
Eric Thomas, MD, MPH
Patient and Family Engagement Experts and Collaborators
Patient and Family Advisory Council, Beth Israel Deaconess Medical Center
Family Advisory Council, Boston Children’s Hospital
Sara Toomey, MD, MPhil, MPH, MSc, Assistant Professor of Pediatrics, Harvard Medical School, Chief Experience Officer, Boston Children’s Hospital
Lisa Rubino, MBA, Director of Patient Experience, Boston Children’s Hospital
Additional Collaborators, Spanish version of OurDx (SIDM grant)
Fuente de Luz, BCH
Eva Gomez, MSN, RN, NPD-BC, CPN, Senior Professional Development Specialist, Boston Children’s Hospital
Patrick Jordan, MBA, Program Director, Virtual Access at Boston Children’s Hospital
Catherine Craven, PhD, MA, MLS, FAMIA, Assistant Professor of Informatics, University of Texas Health Science Center, San Antonio
Boston Children’s Hospital
Dartmouth Hitchcock Medical Center
Institute for Healthcare Improvement
Society to Improve Diagnosis in Medicine
OurDx is in the pilot stage in selected practices at Boston Children’s Hospital (Boston, MA) and Dartmouth Hitchcock Medical Center (Lebanon, New Hampshire)
In Conversation With… Sigall K. Bell, MD Patient Safety Network, AHRQ (2018)
OurDx 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.
Nuestro Diagnostico, a Spanish version of OurDx, is supported by a grant from the Society to Improve Diagnosis in Medicine.
Grants to Enable Diagnostic Excellence AHRQ (2019)