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Strategies for educating public about research
Act locally and nationally, experts advise
Clinical trials offices shouldn’t leave the public education work to IRBs and investigators. There’s room for everyone to get involved, according to leaders of groups that assist in communication between the research community and the public.
"There are issues in the system that we have to fix," says Deborah Collyar, president of Patient Advocates in Research (PAIR) of Danville, CA.
"That’s why going to local communities and targeting various populations could be effective," Collyar says. "People need to know more about medical research and what it’s about."
Each community is different and so educational approaches should be tailored to the community that is being addressed, says Roni Thaler, president of the Center for Information & Study on Clinical Research Participation (CISCRP) in Boston.
She and Collyar offer these suggestions for improving public knowledge about research:
CISCRP has its own web site (www.ciscrp.org/) with many facts and information about the clinical trial process, including information about subjects’ rights, benefits, and risks, Thaler reports.
The web site has a revised version of the group’s brochure, which is filled with answers to key questions people have about research, and it includes a way for people to sign up if they’d like additional information, such as a quarterly update called "The Participant," she says.
The organization will send distribution material, including brochures and other information about research, to any research institution that supports its work, Thaler adds.
Particularly for minority communities, it could be helpful to meet with ministers or to speak on local cable television programs, she adds.
And it’s always a good idea to meet with disease-specific societies, professional societies, and support groups, which usually are looking for monthly speakers, Thaler says.
"This tells people they’ll hear about the latest and greatest, and while the solutions rarely are available to someone who goes to the doctor tomorrow, they’re important because of leading us to better answers through cancer research," she says.
When speaking about cancer research, for example, clinical trials professionals could highlight some examples of clinical trials that have helped with imaging technology, prevention work, and screening for early detection, Collyar adds.
Patients most trust their community doctors, and these same doctors sometimes are good sources of information about potential research populations, so clinical trials professionals and research institutions could do considerably more to teach these physicians about the benefits of research and to improve their understanding of human subjects protection, she notes.
Nearly eight out of 10 people surveyed said their personal physician is their No. 1 source of medical information that they trust, Thaler reports.
"So it’s important to involve community physicians as much as possible," she says.
Also, clinical trials offices could address a common concern among community physicians about keeping track of their patients when they are referred to a clinical trial, Collyar says.
"Most community physicians want to keep their patients and they want to follow their patients’ care," Collyar says. "But if they refer them to a clinical trial, then a lot of times that’s the end of their communication with that patient, and so that’s an issue that needs to be addressed."
Likewise, communities with sizeable Asian populations should have research education materials printed in the common languages that are spoken and read in that area, she adds.