CREDITS

Rachel Grob, PhD, MA

Rachel Grob is the Principal Investigator on this project and a founding member of the Health Experiences Research Network (HERN), the United States’ DIPEx Initiative. In addition to co-leading the project, she conducted some of the interviews. She is a clinical professor, senior scientist, and health innovation program investigator at University of Wisconsin-Madison.

Margaret (Meg) Wise, PhD

Meg Wise is a Co-Investigator on this project. She conducted many of the interviews and participated in multiple aspects of the project. She is a qualitative researcher at University of Wisconsin-Madison who has used patients’ stories to understand illness experiences and improve health service delivery.

Loyda Braithwaite, NP, PhD candidate

Loyda Braithwaite is a Co-Investigator on this project; she recruited participants and co-conducted interviews in Spanish. She is a Nurse Practitioner working with oncology patients and a doctoral student in nursing at the University of Wisconsin-Madison.

Mark Schlesinger, PhD

Mark Schlesinger is a Co-Investigator on this project. He served as coding buddy and participated in multiple aspects of the work. He is a professor of health policy at Yale University, and is a founding member of the Health Experiences Research Network (HERN), the United States’ DIPEx Initiative.

Amye Tevaarwerk, MD

Amye Tevaarwerk is clinician lead on this project and participated in multiple aspects of the work. She is Director of the UW Carbone Cancer Center's Survivorship Program, and an Associate Professor in the Division of Hematology, Medical Oncology and Palliative Care within the Department of Medicine, University of Wisconsin-Madison.

Nora Jacobson, PhD

Nora Jacobson wrote some of the topic summaries for this project. She is a senior scientist and qualitative methodologist at the University of Wisconsin School of Nursing and Institute for Clinical and Translational Research.

Linda Rozmovits, PhD

Linda Rozmovits wrote some of the topic summaries for this project. She was a member of the DIPEx Oxford University research team and later helped establish the Canadian research branch of DIPEx. Linda specializes in qualitative health research and program evaluation and is currently a freelance writer and editor.

Madison Wynn, MPH

Madison Wynn is a project coordinator and participated in multiple aspects of the work. She is a researcher at the Center for Patient Partnerships and in the Department of Family Medicine and Community Health at the University of Wisconsin-Madison.

Emily Warne

Emily Warne is a project coordinator and participated in multiple aspects of the work. She is a research specialist at the Center for Patient Partnerships at the University of Wisconsin-Madison.

Tyler McCarthy

Tyler McCarthy assisted with project coordination and lead clip cutting. He is a research assistant at the Center for Patient Partnerships at the University of Wisconsin-Madison.

Advisory Panel Members

  • Mary Pat Berry, MA - Patient Advocate and Patient Family Advisor at Carbone Cancer Center, UW-Madison & Oregon Health Science University
  • Loyda Braithwaite, NP - Medical Oncology, UW Health UW SMPH
  • Nikki Burrell - HERN, Project participant
  • Kerry Cauley - HERN, Project participant
  • Sofia Garcia, PhD - Associate Professor of Medical Social Sciences and Psychiatry and Behavioral Sciences, Northwestern Feinberg School of Medicine
  • Claire Healy, MS, CGC - Lead Genetic Counselor, Smilow Cancer Genetics and Prevention Program at Yale New Haven Hospital
  • Maria Hortensia Pelayo - HERN, Project participant
  • Lu Marchand, MD - Professor of Family Medicine, University of Washington, chief of palliative care and medical director of the UWMC Palliative Care Service
  • Caroline McClain, PT, DPT - Former Executive Director of Forge Breast Cancer Survivor Center
  • Bob Riter, MHSA - Patient Advocate, Physical Sciences Oncology Center, Cornell University
  • Katherine Smith, PhD, MA - Professor, Johns Hopkins University Bloomberg School of Public Health
  • Desiree Walker - SHARE; National Center for Health Research; PCORI; US Dept of Defense, Patient Advocate and Health Educator

 

Acknowledgements

Most special thanks for the 40 people who told their stories for this project. We also thank Mark Helfand and his team at the Oregon Health and Sciences University for expert editorial input. Skillful assistance was provided by the following previous members of the study team:

  • Jake Nitzkin
  • Pajnag Moua
  • Amy Amessoudji
  • Cecie Culp
  • Molly Jones
  • Madison Crowder

 

Funders

This project was made possible by the UW-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 UW-Madison Office of the Vice Chancellor for Research and Graduate Education with funding from the Wisconsin Alumni Research Foundation; and the Center for Patient Partnerships.