ENACCTING WELLNESS:
A PILOT PROJECT OF ENACCT AND THE WELLNESS COMMUNITY (2007-2012)

The vast majority of people with cancer are either unaware or unsure that participation in clinical trials is an option for treatment. Trial participation among adult cancer patients remains at about three percent(1) ; this rate is even lower among people of color and the medically underserved, who tend to have higher cancer mortality rates than the population as a whole. Treatment approaches for blood cancers are limited, and all patients do not benefit from the same quality of care. Like many cancers, blood cancers(2) disproportionately affect racial and ethnic minority groups. With enhanced access to clinical trials, more patients diagnosed with blood cancers will have more options for treatment and the opportunity to receive quality cancer care.

ENACCTing WELLNESS, funded under a cooperative agreement with the US Centers for Disease Control and Prevention, is a pilot project which seeks to demonstrate how community-centered education, outreach and support services can both address informational needs and enhance access to care among those living with blood cancers in four communities nationwide. Through an innovative ecological framework, directing educational efforts at the intrapersonal, interpersonal, institutional and community perspectives, ENACCTing WELLNESS will:

1. Educate newly diagnosed/newly recurred patients about their treatment options, including the option of receiving their treatment though a clinical trial;
2. Increase awareness of support services for patients, their family members, friends, and caregivers;
3. Educate primary care providers, especially those caring for the medically underserved, about options to refer patients to local clinical trials for first line treatment;
4. Enhance cultural competency skills of local clinical trial investigators and their teams; and
5. Promote and disseminate information about the services outlined above.

ENACCTing WELLNESS will first focus on TWC’s brick-and-mortar facilities in Cincinnati, Philadelphia and San Francisco. The program will address four critical junctures(3) for those diagnosed/recently recurred with blood cancers:

1. At the point of diagnosis (i.e. educating community providers about the importance of referral to local clinical trials);
2. At the point of decision making about treatment (i.e. helping the patient weigh his/her options for care, whether at initial diagnosis or recurrence);
3. At the point of referral (i.e. helping the primary care provider and others doing diagnostic evaluations about the importance of clinical trials as an option for first line treatment) and
4. At the point of accrual (i.e. helping the clinical trial team do a better job with recruitment and retaining persons of color).

Activities

In order to meet these goals, the national staff will

1. Train appropriate Wellness Community staff to provide interviews and treatment decision support for those diagnosed with blood cancers;
2. Train local primary care providers to be “provider trainers,” so that they may train primary care providers about optimal referral of patients to local clinical trials; and
3. Train local clinical trial staff in optimal ways to conduct clinical trials outreach recruitment.
4. Design and implement a national evaluation program and provide ongoing support to sites

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1. Cancer clinical trials: A resource guide for outreach, education, and advocacy. (2007, May 25). Retrieved May 25, 2007, from http://www.cancer.gov/clinicaltrials/resources/outreach-education-advocacy
2. Blood cancers-Non Hodgkins Lymphoma, Leukemia, Multiple Myeloma
3. There is a common myth that clinical trials are only for those who have exhausted other treatment options. Of the thousands of patients participating in Phase III clinical trials, many are receiving first line treatment. There is a very narrow window between diagnosis and initiation of treatment. This “narrow window” presents a unique opportunity to our project.