Cystic Fibrosis
Trust and Equity in the Cystic Fibrosis Community: A Full-Scale Qualitative Study
We have been funded by the Cystic Fibrosis Project to examine dimensions of trust in 40-50 interviews with adults living with CF and parents and guardians of children living with CF.
Rare Diseases
Participants’ Experiences with Genomic Research in the Undiagnosed Diseases Program: A Qualitative Study
Funded by the Center for Human Genomics and Precision Medicine, this project focuses on experiences adults and parents of children with rare diseases have seeking diagnosis, navigating care processes, and participating in the Undiagnosed Disease Program at UW’s Center for Human Genomics and Precision Medicine.
Opioid Use Disorder
Understanding the Experience of Opioid Use Disorder
In collaboration with Oregon Health and Sciences University, we are creating a web-based module for healthexperiencesusa.org about people with experiences of opioid use disorder.
Learning Together to Address Opioid Use Disorder: Developing a Catalyst Film from Health Experience Interviews
With a Department of Family Medicine and Community Health small grant, we are creating a catalyst film about peoples’ experiences of opioid use disorder.
Emotional Experiences of Care
Continuation of Consumer Assessment of Health Care Providers and Systems – VI (CAHPS VI)
Funded by the Agency for Health Care Quality Improvement, we are contributing qualitative expertise to several projects led by Yale University and the RAND corporation related to narrative item sets and, in collaboration with the Cleveland Clinic, an exploration of patients’ experiences with emotional dimensions of care.
Diagnostic Errors, Problems, and Mistakes
Field Testing the NEP-DE: A Follow-On Research Project
In this Moore Foundation-funded project, we will deploy a narrative elicitation protocol in two major health systems to better understand narratives about diagnostic errors, problems, and mistakes at large scale.
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Our Network
Our lab is part of a larger initiative called the Health Experiences Research Network (HERN) – a partnership of patients, clinicians, researchers, and organizational leaders dedicated to implementing the Database of Individual Patient Experiences (DIPEx) methodology in the United States. We are also grateful to collaborate with the Center for Patient Partnerships.
