Frankly Speaking About Cancer Clinical Trials
Cancer Support Community
The Cancer Support Community’s (CSC) Frankly Speaking About Cancer (FSAC) Clinical Trials program is a landmark cancer education series devoted to dispelling common myths about clinical trials and creating awareness among patients and caregivers about the importance of clinical trial participation.
CSC partnered with patients, caregivers, oncologists from academic and community settings, nurses, advocates, communicators, and industry partners to better understand the multiple factors that affect participation in cancer clinical trials.
Survey results indicated that there was a need for patient-centric clinical trials materials. The FSAC Clinical Trials program fills this gap by incorporating the patient experience and voice into the discussion about cancer clinical trials. The program also identifies opportunities to advocate for policy change to improve the clinical trial process and experience.
The newest addition to the FSAC Clinical Trials program is an innovative Photo Narrative that provides easy to understand information about clinical trials using the patient perspective. This eight-chapter book features cancer patients talking with their families and health care teams about the issues they faced when considering a clinical trial. Focus group research with Spanish speakers is underway to create a Spanish cultural adaptation of the Photo Narrative.
Additional program components include: FSAC Clinical Trials web pages, clinical trials fact sheets (in English and Spanish), in-person workshops held at CSC affiliates across the US and Canada, a three-part webinar series covering the major topics related to cancer clinical trials, a series of Frankly Speaking About Cancer internet radio shows highlighting clinical trials from the patient perspective, and clinical trials navigation support on CSC’s Cancer Support Helpline® (1-888-793-9355) through CSC’s Open to Options® support counseling. For more information, visit www.CancerSupportCommunity.org/ClinicalTrials.
Excellence in Patient Ed
2016: Mariela Gallo, MPH, CHES
2015: Family Cancer Retreat - Cancer Services of New Mexico
2014: Tina Papadakos, MA Ed and University Hospitals Seidman Cancer Center Clinical Trials Database Health Literacy Team
2013: Hastings Breast Cancer Support Group
2012: Be the Match: Super Sam vs. the Marrow Monsters
2011: Matthew Ballo, MD for the Road to Wellness
2010: Maximizing Your Patient Education Skills (MPES)
2009: Caregivers’ Guide to Bone Marrow/Stem Cell Transplant, Myra Jacobs
2008: The Learning Center at The University of Texas M.D. Anderson Cancer Center
2007: Diane Moyer, RN, MS, Ohio State University Medical Center, The Partnership for Health Care Education For Limited English Proficiency Patients
2007: Jean Hartford-Todd, CCLS, The Preston Robert Tisch Brain Tumor Center at Duke University Medical Center
2003: Oncology Interactive Educational Series, Princess Margaret Hospital, University Health Network
2001: Leah Mraz, BSN, RN, OCN, My Story: A Diary for People With Cancer, The Cancer Institute of New Jersey
2000: Marilyn McCubbin, PhD, RN, FAAn, Kelly Cotter, BA, Michael Dystra, BS Outlook: Life Beyond Childhood Cancer, University of Wisconsin Cancer Center
2000: M.D. Anderson Patient Education Office, University of Texas
2000: Carolyn Weaver, RN, MSN, AOCN, Ask the Expert Program, Fox Chase Cancer Center
2000: Tanya Smith, BA & Patient and Public Education Departmental Staff, How to Help Your Loved One Stop Smoking, Huntsman Cancer Institute, University of Utah
1999: Amy Deshler, MSW, Kelli Fee-Schroeder, RN, and Kat Thieman, MBA, Setting Course to Reduce Your Risk of Cancer, Mayo Clinic Cancer Center
1999: Dr. Joel Goldwein and Dr. Ivor Benjamin, OncoLink, University of Pennsylvania Cancer Center
1999: Mary Sumpmann, Nancy Goldstein and Staff, Patient Learning Center, University of Minnesota Cancer Center