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On July 18, 2017, the Cancer Support Community hosted an educational event to present the key findings and survey results from the Cancer Experience Registry. The goal of this project is to better understand patients’ cancer experiences by providing a forum for people to share their voices about issues that matter to them, connect with each other. Findings from this report will be communicated to the broader cancer community with the goal of making a difference in how people move through their cancer journey. The Registry documents insights from cancer patients across the cancer experience spectrum, illuminates key areas that impact patients’ lives and, informs stakeholders looking for data-driven care solutions and broad system change.

2017 CANCER EXPERIENCE REGISTRY INDEX REPORT

PERSISTING GAPS IN CANCER CARE NEGATIVELY IMPACT PATIENT OUTCOMES 

WATCH: INSIGHT INTO THE PATIENT EXPERIENCE PRESENTATION, JULY 18, 2017

This report, the second since the Registry’s inception, presents analysis of survey responses from a subset of Registry participants in the following areas of focus:

  • Demographics and background
  • Cancer-related distress
  • Quality of life
  • Treatment decision-making and planning
  • Side effects and symptom management
  • Clinical trials
  • Financial toxicity
  • Work-related experiences

To date, more than 12,000 participants—survivors, cancer patients, and caregivers—representing over 45 cancer types have joined the Registry, and the Cancer Support Community is committed to continue its efforts in expanding that number in 2017 and beyond.

Registry Advisors

Caregiver Advisory Council

Patient Advocates

  • Lauren Berger, MPH, The Leukemia & Lymophoma Society 
  • Kristen Cox Santiago, Cancer Support Community
  • Gail Gibson Hunt, National Alliance for Caregiving
  • Elizabeth Thompson, C-Change 

Caregivers

  • Judith Homer

Medical Exports

  • Leisa Easom, PhD, RN, Rosalyn Carter Institute for Caregiving
  • Laurel Northouse, PhD, RN, FAAN, University of Michigan
  • Kim Ziner, PhD, RN, CBCN, ACNS-BC, Franciscan St. Francis Health Cancer Center 

Psychosocial Experts

  • Rachel Cannady, American Cancer Society
  • Sheila Hammer, MSW, LCSW, Cancer Support Community

Industry

  • Susan Cunneen, Amgen
  • Jennifer Hill, Eli Lilly
  • Tara Scrime, Eli Lilly
  • Holly Seymour, Eli Lilly
  • Gretchen Kelly, Amgen Oncology 

Chronic Lymphocytic Leukemia (CLL) Advisory Council

Advocacy 

  • Fran Castellow, MSed, Patient Advocate Foundation 
  • Jennifer Wilson, LCSW, Leukemia & Lymphoma Society

Medical

  • Barbara Anderson, PhD, The Ohio State University 
  • John Byrd, MD, The Ohio State University
  • Chris Flowers, MD, MS, Emory University
  • Guadalupe R. Palos, DrPH, LMSW, RN, MD, Anderson Cancer Center 

Psychosocial

  • Brian Tomlinson, MPS, BSW, CancerCare

Survivors

  • Lynn Dzwonek
  • Jeff Folloder
  • Dan Rooker
  • Sue Shaddox

Chronic Myeloid Leukemia (CML) Advisory Council

Advocacy

  • Amanda Pauley Kramer, Association of Community Cancer Centers
  • Erin Scwartz, The MAX Foundation
  • Ernest Voyard, JD, Leukemia & Lymphoma Society
  • Elisa Weiss, PhD, Leukemia & Lymphoma Society 

Medical

  • Michael J. Mauro, MD, Weill Cornell Medical College
  • Jonathan Tobin, PhD, Clinical Directors Network, In.

Psychosocial

  • Joseph Greer, PhD, Massachusetts General Hospital
  • Alyson Moadel-Robblee, PhD, Albert Einstein 
  • Mary Beth Rios, RN, MD, Anderson Cancer Center 

Survivors

  • Kay Johnson
  • Laurie Luther
  • Sue Rosenthal

Industry

  • Hadley Mahon, Pfizer

Lung Cancer Advisory Council

Advocacy

  • Andrea Ferris, LUNGevity Foundation
  • Susan Rappaport, MPH, American Lung Association
  • Maureen Rigney, LICSW, Lung Cancer Alliance

Psychosocial

  • Ellyn Charap, MSc
  • Timothy Pearman, PhD, Lurie Cancer Center

Medical

  • Alex Adjei, MD, FACP, Roswell Park Cancer Institute
  • Janine Cataldo, RN, PhD, FAAN, UCSF
  • Ann Culkin, RN, OCN, MSKCC
  • Corey Langer, MD, FACP, Abramson Cancer Center
  • Ebere Onukwugha, MS, PhD, University of Maryland

Industry

  • Kelly Bennett, PhD, Bristol-Myers Squibb
  • Cynthia Brogdon, RN, PhD, Bristol-Myers Squibb
  • Lara Crissey, Boehringer-Ingelheim
  • Elizabeth Hanpeter, Abbvie
  • Wesley Matthias, Abbvie
  • Barrett Scholl, Eli Lilly

Patient Advocates 

  • Maria Burrell

Melanoma Advisory Council

Advocacy

  • Louise Perkins, Melanoma Research Alliance
  • Valerie Guild, MBA, MS, AIM at Melanoma
  • Shelby Moneer, MS, CHES, Melanoma Research Foundation
  • Lisa Newcomb, Melanoma International Foundation

Psychosocial

  • Jennifer Hay, PhD, Memorial Sloan-Kettering Cancer Center
  • Sean Hebbel, LCSW, Cancer Support Community Delaware

Medical

  • Robin Petro, BSN, OCN, Wake Forest Baptist Health
  • April Salama, MD, Duke University

Industry

  • Alexandra Avila, MD, PhD, Bristol-Myers Squibb
  • Heddy Bartell, Bristol-Myers Squibb
  • Robin Edwards, MD, Bristol-Myers Squibb
  • Constance Pfeiffer, PharmD, Bristol-Myers Squibb

Patient Advocates

  • Mark Gorman
  • Donna Piunt
  • Paul Skersis

Multiple Myeloma Advisory Council

Advocacy

  • Shonta Chambers, MSW, Patient Advocate Foundation
  • Jennifer Wilson, LCSW, Leukemia and Lymphoma Society
  • Anne Quinn Young, MPH, Multiple Myeloma Research Foundation

Medical

  • Craig Cole, MD, University of Michigan
  • Thomas Leblanc, MD, MA, Duke Universtiy
  • Joseph Mikhael, MD, MEd, FRCPC, FACP, Mayo Clinic Arizona
  • Tiffany Richards, RN, ANP-BC, MD Anderson

Psychosocial

  • Tara Schapmire, PhD, MSSW, CSW, CCM, OSW-C, University of Louisville
  • Elisa Weiss, PhD, Leukemia and Lymphoma Society

Industry

  • Christen Cuculich, Celgene
  • Gretchen Kelly, Amgen
  • Latika Pandey, PharmD, Bristol-Myers Squibb
  • Chad Saward, MBA, Celgene
  • Michele Renz, RN, MSN, NP, Celgene
  • Kathryn West, Amgen

Survivors

  • Leo Dierckman

Non Metastatic Breast Cancer/Metastatic Breast Cancer Advisory Council

Advocacy 

  • Ivis Febus-Sampayo, SHARE
  • CJ Corneliussen-James/Kelly Lange, METavivor
  • Stacy Lewis, CHES/Michelle Esser, JD, MBA, Young Survival Coalition
  • Shirley Mertz, Metastatic Breast Cancer Network
  • Catherine Ormerod, MSS, MLSP, Living Beyond Breast Cancer
  • Musa Mayer, MS, MFA, Advanced Breast Cancer.org

Medical Experts

  • Patti Ganz, MD, UCLA
  • Arif Kamal, MD, Duke Cancer Center
  • Gail Mallory, PhD, RN, NEA-BC, Oncology Nursing Society
  • Lidia Schapira, MD, Stanford University
  • Patricia Robinson, MD, Loyola University
  • Lillie D. Shockney, RN, BS, MAS, Johns Hopkins University

Industry

  • Beth Burnett, Pfizer
  • Karin Chan, Celgene
  • Susan Gorky, Celgene
  • Lynn McRoy, MD, FACS, Pfizer
  • Kathryn West, Amgen

Psychosocial Experts

  • Barbara Andersen, PhD, Ohio State University
  • Hester Hill Schnipper, LICSW, BCD, OSW-C, Beth Israel Deaconess Medical Center
  • Patricia Steeg, PhD, NIH

Prostate Cancer Advisory Council

Advocacy

  • Ivy Ahmed, MPH, MCHES, PCaBlue
  • Jamie Bearse, Zero – The End of Prostate Cancer
  • Dennis Golden, PCaAware
  • Chuck Strand, Us TOO International
  • James E. Williams, Jr. USA COL (Ret), Pennsylvania Prostate Cancer Coalition
  • Thomas A. Farrington/Mark Kennedy, Prostate Health Education Network

Medical

  • Daniel Geynisman, MD, Fox Chase Cancer Center
  • Bill Nelson, MD, PhD, Johns Hopkins University
  • R. Scott Owens, MD, Urology of Central PA, Inc.

Psychosocial

  • Michael Diefenbach, PhD , North Shore-Long Island Jewish Hospital
  • Rachel Grob, MA, PhD, University of Wisconsin
  • Stephen Lepore, PhD, Temple University
  • Suzanne Miller-Halegoua, PhD, Fox Chase Cancer Center
  • Christian Nelson, PhD, Memorial Sloan-Kettering Cancer Center

Community Outreach/Disparities

  • Vence L. Bonham, JD, National Human Genome Institute, NIH
  • Everett Dodson, Georgetown University
  • Christina Miller, MSS, Health Promotion Council

Industry

  • Ajay Behl, PhD, MBA, Janssen Scientific Affairs
  • Gissoo DeCotiis, Bayer Oncology
  • Joaquin F. Mould, PhD, Bayer Pharma, AG
  • Joanne Vanak, RN, MSN, Janssen Scientific Affairs

Survivors

  • Rick Wexler

Stomach Cancer Advisory Council

Partners/Advocacy

  • Debbie Zelman, Debbie’s Dream
  • Mary-Margaret Killmeyer, Debbie’s Dream

Medical

  • Crystal Denlinger, MD, Fox Chase Cancer Center
  • Andrew Epstein, MD, Memorial Sloan Kettering Cancer Center
  • Hunter Groninger, MD, FAAHPM, MedStar Washington Hospital Center
  • Rachael Lopez, MPH, RD, CSO, NIH
  • Ryan Nipp, MD, Harvard Cancer Center, MGH, Dana-Farber Cancer Center
  • Rita Wickham, PhD, RN

Psychosocial

  • Sara Goldberger, LCSW-R, Cancer Support Community
  • Karen Hurley, PhD

Industry

  • John Bickel, Eli Lilly
  • Tara Walton, Eli Lilly
  • Abby Foster, Eli Lilly

Survivors

  • Randy Hillard, MD
  • Adam Kuchinski
  • Nicole Rimzsa
  • Hans Rueffert

Partners

  • Debbie Zelman, Debbie’s Dream
  • Mary Margaret Killmeyer, Debbie’s Dream