ENACCTION Newsletter March 2013
Spring | March 25, 2013
“Enhancing Access to Cancer Clinical Trials: What will it take?” ENACCT Webinar Series Discusses Key Policy and Procedural Issues Impacting Cancer Clinical Trials
Through its programs and trainings, ENACCT works to change the way community groups, patients, health care providers and researchers think about and act upon clinical research. In order to enable better outcomes, greater access and accrual is necessary, however educating stakeholders is not sufficient. Enhancing clinical trials access also requires stakeholders to address major policy and procedural changes at the local and national level.
In order to fuel discussion around the significant policy issues impacting cancer clinical trial accrual, ENACCT, the Association of American Cancer Institutes (AACI) and the Research Advocacy Network (RAN), with support from Eli Lilly, Genentech, Amgen, Onyx and Celgene, have launched a free monthly webinar series entitled “Enhancing Access to Cancer Clinical Trials: What Will it Take?” With seven successful webinars under their belt, ENACCT has additional webinars scheduled through the end of 2013.
Each webinar has featured experts in the field discussing key issues such as language access, pre-screening procedures, physician bias, health literacy and the informed consent process. The series has piqued the interest of hundreds of diverse participants from across the country and the fields of academia, industry, advocacy and government, averaging over 300 participants per webinar.
As the series progresses, ENACCT will continue its advocacy for recommended systems change in order to facilitate:
- All cancer patients being screened for available cancer clinical trials
- All trial eligible patients being approached by the oncologist
- All trial eligible patients interested in participation being successfully enrolled regardless of language, literacy level or trial-related costs
To view resources from past webinars, see a listing of future webinars or to register for an upcoming webinar, please visit the series website: http://www.enacct.org/our-programs/enacct-policy-webinar-series
Don’t see a topic that interests you? Are you interested in being a speaker for a future webinar? Let us know by emailing email@example.com
Strengthening Clinical Trial Messaging with other Patient Advocacy Organizations
Everyday patients are faced with difficult decisions regarding their treatment following a cancer diagnosis. For over 12 years, the Pancreatic Cancer Action Network (PANCAN) has worked to help pancreatic patients navigate this journey. ENACCT was thrilled to have had the opportunity to work with another patient advocacy organization to strengthen their clinical trial messaging in their phone-based patient support servicearound cancer trials.
Callers are connected with a trained PANCAN Patient and Liaison Services (PALS) Associate and given the opportunity to ask questions about cancer clinical trials and how they work as well as receive assistance in finding a clinical trial for which they may be a match. With support from Celgene and Merck, and assistance from ENACCT, PALS Associates are now working with callers to develop a personal “question list” for them to bring to their next doctor appointment. Callers are now provided with the unique opportunity of being connected with a pancreatic cancer survivor who has participated in a clinical trial for additional one-on-one support.
This program was based on one ENACCT developed with the Cancer Support Community and Dr. Jeff Belkora from UCSF and funded through a cooperative agreement with the Centers for Disease Control and Prevention. In that study, 9 out of 10 patients felt that the list of questions, concerns and expectations contributed to a more productive appointment with their doctor and that the oncologist answered most of their questions. Forty-four percent reported that their oncologist discussed cancer clinical trials with them, much higher than the national average of 15%. In addition, 76% of patients made a treatment decision, 11% of which received treatment through a clinical trial, far above the national average of 3-5%. The study also showed: a decrease in anxiety about the appointment for most patients, repeat use of the tools and techniques learned, and patient and physician satisfaction.
Accessing the Pancreatic Cancer Clinical Trial Education and Support Program
Phone lines are open Monday-Friday, 7am-5pm Pacific Time
Interested in working with ENACCT on a similar collaboration, contact us at firstname.lastname@example.org
ENACCT to Implement Second Generation of the National Cancer Clinical Trial Breakthrough Collaborative (NCCTBC)
In 2010 with support from Allos Therapeutics, Astellas, BMS, Celgene, Genentech, Eli Lilly, Merck, Pfizer and Novartis, ENACCT began the first ever national initiative to enhance the efficiency and effectiveness of CCT recruitment, accrual and retention efforts through a proven quality improvement framework from the Institute for Healthcare Improvement (IHI). The NCCTBC sought to identify practical, patient-centered approaches to increase accrual overall and in particular for ethnic/racial minorities and people over age 65.
ENACCT worked with five community oncology practices from across the country to test, and measure the effectiveness of, small scale changes to both internal and external practices across the cancer care continuum. Over the course of the pilot, 40 distinct changes were tested by the 5 sites, 10 of which were implemented as new practices and procedures.
"Small improvements led to big improvements; measurement helped [us] identify areas that needed improvement that [we] hadn’t previously realized” – Participant Evaluation
While the ability to assess increases in accrual was limited due to a ten-month time frame and small numbers of patients, this pilot showed the application of this quality improvement framework to be both feasible and able to generate meaningful improvements in organizational processes and procedures.
With the knowledge gained and lessons learned from the pilot, ENACCT is hard at work setting the ground work for a second generation of the NCCTBC. An RFP will be released by summer of 2013 for interested oncology practices to apply.
To learn more about the first generation of the NCCTBC and view the final report, please visit the program website: http://www.enacct.org/our-programs/national-learning-collaborative
The Enhancing Minority Participation in Clinical Trials (EMPaCT) Consortium Releases New Online Course for Successful Minority Recruitment
ENACCT is pleased to share with you a link to the website of the EMPaCT (Enhancing Minority Participation in Clinical Trials) Consortium (http://www.empactconsortium.com/). This consortium, funded by the National Institutes of Health, and comprised of the University of Minnesota, the University of Alabama at Birmingham, Johns Hopkins University, MD Anderson Cancer Center and the University of California, Davis worked to develop evidence-based strategies to promote minority participation in clinical trials.
- Understand the Ford conceptual framework describing barriers and facilitators to minority recruitment to cancer clinical trials
- Identify advantages and disadvantages to general approaches to minority recruitment
- Learn applications for successful models of minority recruitment in your specific research environment
- Understand the applicability of successful models of minority recruitment approaches across multiple vulnerable populations
Additional trainings and resources for those involved in cancer clinical trials are available on the EMPaCT website. Among the resources mentioned is ENACCT’s free E-Learning Series “Your Role in Cancer Clinical Trials,” offering 6 online courses for community leaders and patient advocates, primary care providers and clinical research staff.