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.
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.
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.
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.
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.
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Briana Patrick, MS
Briana Patrick assisted with project organization and lead clip cutting. She is a Research Specialist in the Department of Family Medicine and Community Health at the University of Wisconsin-Madison.
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.
Jessica Roth
Jessica was a coordinator on the project and worked as a Research Program Coordinator in the Department of Health, Behavior and Society at Johns Hopkins Bloomberg School of Public Health. She was involved in many aspects of the project including recruitment, consent, and data processing.
Advisory Panel Members
Gwen Darien [KCS1] [KCS2] [JE3] – Patient Advocate, Executive Vice President National Patient Advocate Foundation
Stephan Ehrhardt, MD, DTMPH, MPH – Associate Professor, Department of Epidemiology, Johns Hopkins University
Jean Geiger, RN – HERN, Project participant
Christopher Luzzio, MD – Professor, Department of Neurology, University of Wisconsin-Madison
Ravi Misra, MBA, PMP, CSM, HCDP – HERN, Project participant
Ellen Mowry, MD – Professor of Neurology and Epidemiology, Johns Hopkins University
Hollie Schmidt, MS – Vice President of Scientific Operations at Accelerated Cure Project for MS
Jim Turk, MS – HERN, Project participant
Desiree Walker, BA – SHARE; National Center for Health Research; PCORI; US Dept of Defense, Patient Advocate and Health Educator
Acknowledgements
Most grateful thank you for the people who told their stories for this project.
We also appreciate Mark Helfand and his team at Oregon Health & Sciences University for their expert editorial input.
Special thanks to Kay “Taddy” Dickersin, who worked tirelessly to help launch HERN and specifically hoped to see the network produce a module on experiences with clinical trials. Professor Dickersin also provided financial support for this project and involvement of Johns Hopkins faculty in HERN initiatives.
Thank you to Accelerated Cure and the Multiple Sclerosis Society for help with recruitment.
Skillful assistance with study coordination and clip-cutting was provided by Tyler McCarthy.
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.
Some of the experiences with clinical trials included here were drawn from other Health Experiences Research Network studies.
The childhood cancer study, coming to the site soon, was supported by Oregon Health and Science University through the NIH National Center for Advancing Translational Sciences (UL1TR002369).
The cancer risk that runs in families study was supported by the University of Wisconsin-Madison Institute for Clinical and Translational Research funded by a Clinical and Translational Science Award program, through the NIH National Center for Advancing Translational Sciences (ULITR002372), and the School of Medicine and Public Health Wisconsin Partnership Program (WPP 3086).
The breast cancer study was supported by the University of Wisconsin-Madison Institute for Clinical and Translational Research funded by a Clinical and Translational Science Award program, through the NIH National Center for Advancing Translational Sciences (1UL1TR002373), and the School of Medicine and Public Health Wisconsin Partnership Program (WPP 4358).