OurDiagnosis (OurDx) Project
Why engage 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.
Patients and families are vital diagnostic partners
Patients and their care partners can contribute the diagnostic process through coproduction of visit notes. 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 hold unique knowledge about themselves and 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.
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)
Frequency and Types of Patient-Reported Errors in Electronic Health Record Ambulatory Care Notes JAMA Network Open (2020)
Our Diagnosis (OurDX) research:
- Draws on patient and family experiences to develop a patient-centered framework for understanding and measuring patient-reported diagnosis-related breakdowns, and
- Designs and tests interventions to co-produce a diagnosis and visit notes.
We call this OurDx. Using OurDx, patients and families contribute information electronically before their medical visits. This information may help clinicians reach more timely and accurate diagnoses. Patient and family contributions are also used to co-generate visits note, which has the potential to decrease documentation burdens for clinicians.
Patients Contributing to Their Doctors’ Notes: Insights From Expert Interviews Annals of Internal Medicine (2017)
Empowering patients and reducing inequities: is there potential in sharing clinical notes? BMJ Quality & Safety (2020)
Why invite patients and families to share information?
OurDx focuses on the diagnostic process, and is an expansion of OurNotes.
Our DX was created after the development of the “Patient-Centered Framework” (PCF) for patient-reported diagnosis-related breakdowns. The PCF was derived from the engagement of a multi-stakeholder advisory group and analysis of more than 2,000 patient reports of ambulatory breakdowns in 2 population-based surveys of over 25,000 patients in the U.S. The PCF informed the OurDx design and helped 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)
OurDx in Spanish
In September 2020, OpenNotes received a separate grant from the Society to Improve Diagnosis in Medicine (SIDM). This grant expanded the use of OurDx for 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, dubbed “Nuestro Diagnostico.”
Members: OurDx 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 QualityPatient-Researcher
Communications & Patient Initiatives Director, OpenNotes, Beth Israel Deaconess Medical Center
Boston Children’s Hospital
Dartmouth Hitchcock Medical Center
Multi-stakeholder Advisory Group and Statistical Team
- Feleshia Battles-Byrdsong
- Fabienne Bourgeois, MD, MPH
- Catherine M. DesRoches, DrPH
- Joe Dong, MS
- Stephen Liu, MD, MPH
- Elizabeth Lowe
- Patricia McGaffigan, RN, MS, CPPS
- Long Ngo, PhD
- Sandy A. Novack
- James D. Ralston, MD, MPH
- Liz Salmi
- M. Suz Schrandt, JD
- Sue Sheridan, MIM, MBA, DHL
- Lauge Sokol-Hessner, MD
- Glenda Thomas
- 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 (Boston, MA)
- Dartmouth Hitchcock Medical Center (Lebanon, NH)
- Institute for Healthcare Improvement
- Society to Improve Diagnosis in Medicine
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)