CREDITS
Jill Owczarzak, PhD MA
Jill Owczarzak was the Principal Investigator on this project. She is an Associate Professor in the Department of Health, Behavior and Society at Johns Hopkins Bloomberg School of Public Health. She conducted many of the interviews and led multiple aspects of the project.
Katherine Clegg Smith, PhD MA
Katherine Clegg Smith (Kate) is a member of the Health Experiences Research Network Steering Committee and was co-investigator on the project. She is a Professor in the Department of Health, Behavior and Society at Johns Hopkins Bloomberg School of Public Health and directs the Center for Qualitative Studies in Health and Medicine. She was involved in the conceptualization of the project, study design and all aspects of the analysis.
Jyoti Saha, MHS
Jyoti Saha acted as a project coordinator and participated in multiple aspects of the project, including coding the participant interviews. She is a Research Program Coordinator in the Department of Health, Behavior, and Society, at the Johns Hopkins Bloomberg School of Public Health.
Jane Evered, PhD, RN
Jane Evered was co-investigator on this project. She is a Primary Care Research Fellow at University of Wisconsin-Madison in the Department of Family Medicine and Community Health. She conducted some of the interviews and participated in all aspects of the project.
Carolyn Ellison, MPP
Carolyn Ellison supported data management and participant review activities. She is a doctoral candidate at the Johns Hopkins Bloomberg School of Public Health within the Department of Health, Behavior and Society.
Zephorah Bissoon
Zephorah Bissoon acted as a research assistant on this project, participating in various aspects including biography writing and clip cutting. She is a recent graduate of Johns Hopkins University.
Rachel Grob, PhD, MA
Rachel Grob acted as “coding buddy” and co-investigator on this project, participating in multiple aspects and conducting some of the interviews. She is a founding member of the Health Experiences Research Network (HERN), the United States’ DIPEx Initiative, and a Clinical Professor, Scientist III, Director of National Initiatives, and Health Innovation Program Investigator at University of Wisconsin-Madison.
Emily Warne
Emily Warne acted as the lead coordinator for the building of this site. She is an active member of the Health Experiences Research Network and is a Research Program Coordinator in the Department of Family Medicine and Community Health at the University of Wisconsin-Madison.
Madison Wynn, MPH
Madison Wynn participated in several aspects of the work, including project coordination and biography writing. She is a Researcher at University of Wisconsin-Madison in the Department of Family Medicine and Community Health and is a member of the Health Experiences Research Network.
Gwyn Petersen
Advisory Panel Members
- Jennifer Adams, MA – HERN, Project participant
- Julie Fiol, LMSW, RN, MSCN – Associate Vice President, Clinical Innovation and Strategy at National MS Society
- Christopher Luzzio, MD – Professor, Department of Neurology, University of Wisconsin-Madison
- Ellen Mowry, MD – Professor of Neurology and Epidemiology, Johns Hopkins University
- Marquita Riley – HERN, Project participant
- Danelle O'Neill – Senior Vice President, Community Leadership at the National MS Society
- Hollie Schmidt, MS – Vice President of Scientific Operations at Accelerated Cure Project for MS
- Jim Turk, MS – HERN, Project participant
- Dulce Warren, PhD, RNC, WHNP-BC – HERN, Project participant
Acknowledgements
Most grateful thank you for the people who told their stories for this project. Thank you to Accelerated Cure and the National Multiple Sclerosis Society for help with recruitment, as well as our clinician partners for providing their expertise. We also appreciate Mark Helfand and his team at Oregon Health & Sciences University for their expert editorial input.
Funders
This project was made possible by the University of Wisconsin-Madison Institute for Clinical & Translational Research (ICTR) with support from NIH-NCATS Clinical and Translational Science Award (CTSA) 1UL1TR002373 and a strategic grant from the UW SMPH Wisconsin Partnership Program (WPP 4358). The Johns Hopkins Center for Qualitative Studies in Health and Medicine also provided resources to support this initiative.