CREDITS

Funders

Support for this project was provided by the University of Wisconsin-Madison Institute for Clinical and Translational Research funded by a Clinical and Translational Science Award (CTSA) program, through the NIH National Center for Advancing Translational Sciences (NCATS), grant ULITR002372, and the University of Wisconsin School of Medicine and Public Health Wisconsin partnership Program grant #3086. Additional support was provided by the Center for Patient Partnerships.

 

         

 

 

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 many of the interviews. She is a Clinical Professor and Senior Scientist 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 actively in multiple aspects of the work. She is a qualitative researcher at University of Wisconsin-Madison who uses used patients’ stories to understand illness experiences and improve health service delivery.

Katherine (Kate) Clegg Smith, PhD, MA

Kate Smith is a Co-Investigator on this project and a founding member of the Health Experiences Research Network (HERN), the United States’ DIPEx Initiative. She conducted some of the interviews and participated actively in multiple aspects of the work. Kate is a professor in the Department of Health, Behavior and Society in the Johns Hopkins Bloomberg School of Public Health. She is also the Director of the Center for Qualitative Studies in Health and Medicine.

Loyda Braithwaite, NP, PhD candidate

Loyda 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.

Nancy Pandhi, MD, MPH, PhD

Nancy Pandhi is a Co-Investigator who conducted some of the interviews at the beginning of this project and a founding member of the Health Experiences Research Network (HERN), the United States’ DIPEx Initiative. She is a practicing family clinician and associate professor at the University of New Mexico. Both her clinical practice and community-engaged research program are dedicated to improving the health of underserved populations. 

Mark Schlesinger, PhD

Mark Schlesinger is a Co-Investigator on this project. He served as coding buddy and participated actively 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.

Jennifer Weiss, MD

Jennifer Weiss is clinician lead on this project and participated actively in multiple aspects of the work. She is an Associate Professor at the University of Wisconsin School of Medicine and Public Health, Division of Gastroenterology and Hepatology, as well as the Director of the UW Health Gastroenterology Genetics Clinic.

Nora Jacobson, PhD

Nora Jacobson wrote many 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.

Emily Warne

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

Madison Wynn, MPH

Madison Wynn assisted with project coordination. She is a research specialist at the Center for Patient Partnerships at the University of Wisconsin-Madison.

Jake Nitzkin

Jake Nitzkin 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

  • Natasha Bonhomme - Chief Strategy Officer, Genetic Alliance; Director, Baby’s First Test
  • Karina Brierley, MS, LCGC - Licensed Certified Genetic Counselor, Smilow Cancer Genetics and Prevention Program at Yale New Haven Hospital; Planning Committee Member, The Connecticut Genetic Counselors’ Association (CTGCA)
  • Gwen Darien - Executive Vice President, Patient Advocacy and Engagement at the National Patient Advocate Foundation (NPAF); Chair, Consumer Engagement in Genomics Working Group, NHGRI
  • Janlynn Druce Jones, LCPC - Project participant; Licensed Clinical Professional Counselor working in private practice; Integrated Assessment Screener, Northern Illinois University; contracted with the Illinois Department of Children and Family Services
  • Sara Knight, PhD, MA - Professor, Department of Internal Medicine, Division of Epidemiology at the University of Utah School of Medicine; Research Scientist, VA Salt Lake City Healthcare System
  • Xavier Llor, MD, PhD - Co-Director, Cancer Genetics and Prevention Program; Associate Director for Cancer Screening, Center for Community Engagement and Health Equity (CEHE); Medical Director, Colorectal Cancer Prevention Program at Yale University
  • Erik Parens, PhD - Senior Research Scholar, The Hastings Center; Director, The Hastings Center Initiative in Bioethics and the Humanities; Steering Committee member, Columbia University’s Center for Excellence in ELSI Research
  • Kala Visvanathan, MD, MHS - Professor, Epidemiology and Medical Oncology at Johns Hopkins University; Director, Clinical Cancer Genetics and Prevention Service at Johns Hopkins Sidney Kimmel Cancer Center
  • Irina Vyazunova, PhD - Project participant; Molecular Biologist, Senior Research Scientist at Promega Corporation
  • Kari Wisinski, MD - Associate Professor, University of Wisconsin Carbone Cancer Center; Medical Oncologist; Lead, UW-Madison High Risk Breast Cancer Clinic

Acknowledgements

Most special thanks for the 47 people who told their stories for this project.

Skillful assistance was provided by the following previous members of the study team:

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