Cancer Clinical Trials Save Lives – How can we educate people about their options?

Purpose: The Hawaii Clinical Trials Education Coalition (CTEC) and the Cancer Information Service (CIS) sought to learn what methods are most effective to increase awareness of and participation in cancer clinical trials, currently at only 3-5%. Extensive research shows no clear answers for successful programs.

Methods: An initial series of 6 focus groups were held to learn about effective messages and media for educating people about cancer clinical trials. Two groups were held for people with cancer, two for people without, one for trial participants and one on Maui for people with cancer. Participants reflected the ethnic make-up of Hawaii, with 72% being Asian/Pacific Islanders.

Based on results, messages were created using an Integrative Theory Model and were then refined and ranked by the Coalition. Using a loss/gain matrix, the messages were verified by two final focus groups.

Results: 1. Physicians are central to education and referral – oncologists, specialists and Primary Care Physicians. 2. Awareness of trials is poor. 3. Participants experiences are positive. 4. A variety of media are effective including brochures, internet, and personal communication. 5. Positive messages that emphasize hope, learning about options, altruism, and taking action were the most effective.

Recommendations: 1. Programs educating and involving physicians should be established. 2. Education about clinical trials is essential. 3. Participants could be used as Ambassadors for education, reaching out to people with cancer and their support team (family, friends, health professionals.) 4. Messages should offer hope and emphasize the need for education and taking action.