Pilot Education Program (Funded through 12/2008)
A New Approach to Cancer Clinical Trial Education
In 2006, ENACCT launched a unique and ambitious Pilot Education Program (PEP) on community engagement and education regarding cancer clinical research. From a national competitive process with more than 60 applicants, ENACCT funded three unique partnerships in Boston, MA, Decatur, IL and Tacoma, WA. The program ended in 2009.
ENACCT's educational approach helped the partnerships deliver innovative educational programming to community leaders, primary care providers and clinical research staff.
ENACCTS advocacy model helped these sites to explore and address which local organizational practices or state policies would help more prospective patients, particularly the underserved, to be offered and have positive experiences with cancer clinical trials as a part of quality cancer care, helping to ensure that clinical trials are always on the menu of treatment options for all eligible patients.
ENACCT PEP SITES are focused on meeting five critical objectives:
1. Change knowledge, attitudes, and beliefs about cancer clinical trials among health care providers and community leaders.
2. Enhance the acceptability of cancer clinical trials among community members.
3. Increase the number of inquiries about cancer clinical trials.
4. Increase the number of referrals to cancer clinical trials.
5. Reduce local barriers to cancer clinical trial access.
PEP Community Partners
- Cross Cultural Collaborative (CCC) of Pierce County in Tacoma, Washington: With previous work in improving tobacco prevention and cessation among ethnically diverse groups, the CCC works collaboratively to promote community health and systemic change in formal and informal health care systems to be accessible, available, and culturally appropriate for all.
- Cherishing Our Hearts and Souls Coalition (COHS) in Boston, Massachusetts: COHS is devoted to reducing racial and ethnic health disparities in the greater Boston community through social transformation strategies.
- Decatur Community Partnership (DCP) in Decatur, Illinois: DCP is a federation of agencies, organizations, and people working collaboratively to improve the community health in Decatur and Macon County.
Search for cancer clinical trials in:
To date, ENACCT has already reached several key milestones in advancing PEP.
- Development of an action oriented Train-the-Trainer Program: ENACCT has developed a comprehensive train-the-trainer curriculum for primary care providers and community leaders.
- Development of new training programs for clinical research teams to improve the recruitment, consent and accrual processes, especially among ethnic and racial minorities.
Preliminary data shows that since June 2006, the sites have:
- Reached well over 2,500 people across these target groups in trainings, workshops and presentations, providing:
- workshops to more than 870 community leaders, more than half of whom were from minority groups
- workshops with CME to over 250 primary care providers, more than one quarter of whom were from minority groups and 42% of whom were nurses
- workshops with CME to 61 oncology providers, most of whom were research nurses
- presentations to over 1,300 community members.
- Increased knowledge across all groups, with a mean increase of 8.44 at a p<.001 level
- Distributed more than 49,000 information cards at workshops, presentations and local events
- Generated the creation of almost 100 unique profiles with a cancer clinical trial matching service (EmergingMed).
Reflections from Cross Cultural Collaborative of Pierce County, Tacoma Washington
Samantha Yeun, site coordinator
The ENACCT educational model has not only provided information to the community leaders and members, but has also fostered new learning for the collaborative agencies and staff as well... The impact on the members of the Collaborative cannot be limited to the three year duration of the program. From my perspective, we have probably only just begun to make a small impact on the community's knowledge and only just begun to scratch the surface with health care providers and a few local oncologists; the efforts that we have put in need to continue. As the ENACCT Site Coordinator, it has been a privilege to work on this project. I have gained a great deal of knowledge from our work with health care providers, cancer survivors, community educators and supporters. I have had the opportunity to meet and make connections with other cancer support agencies, healthcare institutions and cancer researchers at the local and national level. ENACCT's training has armed me with a strong sense of what is right and what is needed to ensure social justice in access to cancer care. I hope to continue to be an agent of change for this cause.
Reflections from Decatur Community Partnership, Decatur IL
Abbey Britton, site coordinator
Funding from ENACCT for the PEP program helped us to establish a genuine relationship with the local Amish population. We were also able to take community leaders and healthcare providers and equip them with knowledge of clinical trials, how they are conducted, and why it is important to get the word out to our community about them. ENACCT trained our trainers on adult education and public speaking. This allowed the trainers to gain and improve upon their skills, talents, experiences and confidence. Being a pilot program, we quickly learned to be flexible and to have a lot of patience. We decided to focus on one thing at a time and work together, utilizing the strengths of everyone involved. With that, we were able to see that our challenges were far outweighed by our successes. While the PEP allowed us to acquire new funding for our community, it also gave birth to a new era of cancer treatment options. The most sustaining impact the PEP made in our community is the knowledge of how ordinary people can speed up the process of finding a cure for cancer.
Summary Report - February 2010
ENACCT's Pilot Education Program (PEP)
Successes and Lessons Learned in Cancer Clinical Trials
Published Results - September 2011
The Promise of Community-Based Advocacy and Education Efforts for Increasing Cancer Clinical Trials Accrual
Journal of Cancer Education