Just before New Years, Kimberly Gibson an enthusiastic gene positive young woman from Atlanta, Georgia sent this message on behalf of a group working for Huntington's: "We have a few questions. How realistic is a cure within ten years? What kind of treatment do you predict us having in five? What would it take to make it happen?"
What kinds of treatment are realistic in 5 or 10 years is more than I can know, or guess. But I am pretty sure I know what it will take and who will "make it happen". It will be people who work with passion -- just like her.
Making it Happen: Kimberly Gibson's non-profit Atlanta group, started just a few months ago and now up to 16 members works to increase community awareness about Huntington's (HD), and to provide service for people with HD. But what else is prominent in their mission? The desire to learn about clinical trials for HD and to support participation in them. Grass roots groups like these -- working from the bottom-up -- will be vital to successful recruitment and completion of Huntington clinical trials.
What is Bottom-Up Education for Clinical trials? And How is it Different from Top-Down?
Top-Down Clinical Trial Education: This most often is limited to the traditional lecture given by clinical trial investigators and other professionals who are taught to be, and strive to be objective. This type of education is and will always be important, but the present track record of slow HD recruitment -- now stalled at a snail's pace -- shows that the top-down approach by itself will not be enough to bring the thousands of people we need now and in the future for clinical trials.
Why is top-down not enough? There is an important factor that limits successful top-to-bottom recruiting efforts: Traditional objective lectures often come across as a group of emotionless facts. This is probably why enrollment in clinical trials for Huntington's did not increase following excellent lectures on clinical trials that were well attended at the 2009 National HDSA convention in Phoenix. Why? The objective factual type of message given didn't generate enthusiasm.
Down-Up Transforming Clinical Trial Education: This is information given at the grass-roots level by peer leaders. What is important, and different from traditional top-bottom academic lectures is how the facts of clinical trial education are delivered. The difference is that facts are given with feeling. The clinical trial message is transformed from mere cognitive factual data to a message that includes emotion data - or how a person feels about clinical trials and the importance they attach to them.
This type of transformation teaching and learning which includes emotion data can take place in a doctor's visit if given enough time. And indeed this is a method of communication that is taught in some cancer programs [Back AL 2009]. But the greater opportunity for transforming clinical trial education is in Huntington's support groups, or those groups like Kimberly's who share a vision and personal passion. In these small groups there is time and a comfortable place to educate, learn, and discuss the facts and feelings about clinical trials.
Can bottom-up transforming methods be effective? A collaborative HDDW-HDSA study in the Pacific Northwest suggests it is effective. This study compares the success of recruitment strategies using data from the ongoing HART clinical trial for ACR16 near Seattle. Five methods for supplying HART information and education were used, then sources of referral to the trial center were obtained and compared:
- Peer led support groups: 8 referrals
- Mailers from National HDSA: 1 referral
- Peer led Northwest HDSA Symposium workshop: 2 referrals
- HDtrials.org email: 0
- COE referral: 0
What made the difference was how the facts of clinical trials were presented to the community.
Fostering Down-Up education: To be effective at a national level, our organizations need to create what Joe Giuliano from CHDI has called an Ambassador Program for clinical trials. Such a program would utilize individuals drawn from our lay community of HD families. Specifically we need to:
- Identify individuals or groups who are interested, willing to learn, and have enthusiasm about clinical trials.
- Train those individuals in the facts - and just as important -- in the methods of how to give transforming clinical trial education.
- Encourage those who are trained to train others in geographic areas where there is no clinical trial awareness.
- Encourage and facilitate cooperation and timely communication between lay ambassadors and clinical trial investigators.
Editor comments: Old ways of top-down recruiting at academic centers are effective for only a small part of the Huntington's population, and now this group is maxed out. To recruit enough participants to complete clinical trials efficiently -- that can bring treatments - our organizations like HDSA and the Huntington Study Group (HSG) must add new strategies nation-wide. New methods like the ambassador program -- which has been shown to work in the Northwest -- is one new and effective way for delivering information about clinical trials. It works effectively in the Northwest, and my bet is that given a chance, it will work in other geographic areas too. We can work together to (borrowing Kimberly's words) "make it happen."
Back AL, Arnold RM, Baile WF, Tulsky JA, Fryer-Edwards K. Humanism in oncology. What makes education in communication transformative?. J Cancer Educ. 2009;24(2):160-2. doi: 10.1080/08858190902854863. PubMed abstract