Public Engagement and Clinical Trials New Models and Disruptive Technologies: Workshop Summary (2012) / Chapter Skim
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5 Messages and Methods for Public Engagement
5 Messages and Methods for Public Engagement
Pages 39-48
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From page 39... ...
people into our research and to get people into our research community. In a discussion session of the workshop, this theme reemerged when Ann Bonham, Chief Scientific Officer, Association of American Medical Colleges, suggested that reluctance on the part of the public to participate in clinical trials may be because investigators have not made them feel like partners.
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From page 40... ...
Christine Zarcadoolas, Associate Professor, CUNY School of Public Health at Hunter College and Mount Sinai School of Medicine, defined health literacy as "the wide range of skills and competencies that people develop over their lifetimes to seek out, comprehend, evaluate, and use health information and concepts to make informed choices, reduce health risks, and increase quality of life" (Zarcadoolas et al., 2006)
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From page 41... ...
(In fact, most health information that hospitals and public health depart ments produce are written at the 10th- or 12th-grade level, which may help perpetuate health illiteracy, Zarcadoolas said.) Zarcadoolas remarked that NIH's ClinicalTrials.gov should be a major source of information for people asked to participate in a clinical trial.
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From page 42... ...
: While in a clinical trial, participants following a protocol are seen regu larly by the research staff to monitor their health and to determine the safety and effectiveness of their treatment. Zarcadoolas asked some of the patients she works with, who are generally low-literacy, low health literacy, and underserved, what they believed this statement means.
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From page 43... ...
When respondents in a 2010 Capstrat survey were asked who was most influential "the last time you needed information on a health issue," respondents chose physicians (44 percent) over other health professionals and sources, said Janet Tobias, Ikana Media and Adjunct Assistant Profes sor, Mount Sinai School of Medicine.
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From page 44... ...
The information sources that appear on the first page of Google results range from the NIH-sponsored registry of all clinical trials, ClinicalTrials.gov, discussed previously, to nonprofit and for-profit trial matching sites, to a Wikipedia entry, to a Medline resource, to recent news stories, which often focus on problems arising from clinical studies. Even if prospective trial participants choose an authoritative site, they may not understand what they find there, Tobias said.
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From page 45... ...
She cited another University of Chicago behavioral economist, Nobel Laureate Gary Becker, who has said, "It doesn't matter what you or I do, it's how the whole group behaves." Behavioral economics again would suggest that people want to be prudent (eat properly, exercise, contribute to science that might help future generations) , but, said Boden-Albala, "They just don't want to do it right now." Social scientists have shown large differences in participation in certain programs depending on whether people must opt into the program or opt out (e.g., organ donation programs or 401[k]
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From page 46... ...
The study re quired approval to obtain "emergency consent." A lengthy consent form read to par ents holding a critically ill child was neither feasible nor humane. Yet parents needed to understand (and subsequent research shows they did)
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From page 47... ...
Although social network partici pation is heavily skewed toward the younger generation, a 2010 survey showed rapid growth in use among older adults: almost half of people 50 to 64 use social networking sites, as do more than a quarter of those 65 and older (Pew Internet and American Life Project, 2010)
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