Outcomes of cancer research begin with community awareness

Each month, the Community Service team at Penn State Milton S. Hershey Medical Center learns about different community service activities being performed by members of the Penn State Hershey campus. At a recent monthly meeting, Betsy Aumiller, assistant professor in the Department of Public Health Sciences, shared information about a project that she is a co-investigator on, “Increasing participation in cancer research studies in central PA: A Pilot Study” for Dauphin, Mifflin and Juniata counties.

The process for advancing biomedical knowledge depends upon recruiting an adequate and representative sample of residents to voluntarily participate in research studies. Comprehensive cancer centers such as the Cancer Institute seek to recruit eligible community members to participate in a wide variety of cancer research studies so that new prevention, diagnostic, treatment and quality of life advances can be developed. However, despite these research needs, participation remains less than optimal:

  • Although about 20 percent of cancer patients are medically eligible, trial participation in the United States is only 3 percent.
  • In 2000, 85 percent of cancer patients were either unaware of studies or unsure that participation in a study was an option.
  • However, 75 percent later said they would have been willing to enroll had they known it was possible.

Much research has studied the reasons why people do not participate in research studies. Reported barriers to participation include lack of awareness; lack of access; fear, distrust, or suspicions of research; practical or personal obstacles; insurance or cost; fear of randomization, and unwillingness to go against a personal physician's recommendations. To learn more about the critical role of education and awareness in this dilemma, faculty in Public Health Sciences launched a project to learn more about the connections between clinical trials education in the community and participation in cancer research studies in rural central Pennsylvania.

The National Cancer Institute has developed a lengthy series, the Clinical Trials Education Series (CTES) to educate potential participants about cancer studies. To further investigate the usefulness of this existing resource, the team’s project aimed to identify changes to the CTES that may improve its cultural sensitivity and effectiveness for local communities.

To do this, they adapted the CTES into a one-hour educational session and then presented their version to eight community groups in central Pennsylvania. Faith communities, especially African-American churches, have been used as primary setting for the delivery of health promotion programs, particularly to vulnerable populations. Because health education in faith-based settings has been found to be effective, some of the educational programs were delivered within these venues. Eight focus groups were conducted with attendees after each session to gain additional information and feedback.

This project reached 97 community members in central Pennsylvania. Through a pre/post session assessment and focus group, researchers learned that participants had a significant increase in knowledge and willingness to recommend clinical trials participation to others. Focus group feedback indicated substantial changes in participants’ perceptions and associated misinformation about cancer clinical trials. In addition, the attendees provided numerous suggestions for customizing future educational sessions about clinical trials to include: local testimonials, more in-depth information about local trials, and the integration of spiritual concepts as a program delivery option. These results will be used for future grants to study a more customized approach to cancer clinical trial education in the local community on a wider scale, in addition to measuring actual recruitment rates.

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Last Updated September 30, 2010