Improving Patient Safety

This research aims to:

1. Draw on patient and family experiences to develop a patient-centered framework for understanding and measuring patient-reported diagnosis-related breakdowns.
2. 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.

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.

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: 

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

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

Patient-Researcher

Liz Salmi, Communications & Patient Initiatives Director, OpenNotes, Beth Israel Deaconess Medical Center

Research Assistants

Nicholas Hart, Boston Children’s Hospital

Brianna Mahon, 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

Partner Organizations

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)