People from all populations should be encouraged to participate in clinical trials. There are issues in certain cultures that need to be addressed, but the fact is this — if ethnic groups don’t participate in research, we may never know how to truly treat, maintain, or cure the variations in cancer that exist.
Advocates must learn where new discoveries fit into the development process so we can make sure EVERYONE knows when to expect them for people (not mice!), and why participating in clinical trials is worthwhile for a person to consider.
Advocates must be VERY careful not to lose the whole picture. When we work with scientists we can also help temper the scientists’ language by helping them understand how non-scientists see things (including journalists).
Advocates play a crucial role in the design of all clinical trials. We can make sure the scientific questions also address practical issues for cancer patients, and that the participants’ needs are being taken into consideration.
Advocates need to ensure that clinical trials provide as many answers as possible while considering what each trial participant has been asked to do in the process.
Patient advocates can help identify ways to speed up the trial process by giving feedback on the trial’s feasibility from a prospective participant’s viewpoint and by promoting community interest in studies that are ethical and important.
Unfortunately, some people in the approval process are not only overly cautious; they are beginning to squelch the innovation and creativity that has been sohard to foster! There is a delicate balance, and patient advocates must urge those with approval power to allow innovative ideas to flourish while considering safety.
Advocates can expand the thought process so that longer-term survival rates become the norm. Advocates also need to challenge the term “cure” when it is used in discussions unless it is proven. “Remission” can be used instead.
The above are advocate statements about how we can make a difference in research. You can be part of this advocacy. Accrual in prostate cancer clinical trials is often difficult. If we want to have new treatments we need to find ways to have men participate in trials.
There is a clinical trial outreach program that was developed by SPORE advocates that can be used as a template for outreach to all communities. You can access it here.
The National Cancer Institute has produced several products including publications, booklets, videos, slide representations on CD-ROM( also in Spanish) and online training programs that will help you at all levels when setting up outreach programs. You can download them here.