Ageism in Young Adults
Ageism through a new lens: Understanding and addressing young adults’ experiences with bias in health care
Funded by the Department of Family Medicine and Community Health and the University of Wisconsin-Madison, we are conducting a secondary analysis of health experiences research interviews to understand how young adults have experienced ageism in healthcare.
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.
Diagnostic 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.
Patient-Reported Diagnostic Safety Events in Ambulatory Care Settings: A National Survey of Systemic Influences Disparities and Persisting Consequences
Funded through the Agency for Healthcare Research and Quality and the Moore Foundation, we are collaborating with colleagues at Yale (lead) and Johns Hopkins to field a mixed methods survey and conduct a follow-on interview study to better understand narratives long-term impacts of diagnostic problems and mistakes.
Duchenne Muscular Dystrophy (DMD)
Participants’ Experiences with Duchenne Muscular Dystrophy
Funded by the Department of Neurology at UW-Madison, this project explores the lived experiences of individuals with Duchenne Muscular Dystrophy (DMD), focusing on transitions from pediatric to adult care, durable medical equipment, and emotional and social experiences.
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.
Moebius Syndrome
Learning from adults and parents of children living with Moebius syndrome: A Rigorous Qualitative Study
Funded by the Moebius Foundation, we are exploring healthcare experiences of adults and parents of children living with Moebius syndrome, including experiences with primary care, surgery, and support services.
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.
Previous Projects
Contact Us
Email: Contact »
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.
