Abstract
Even though the public has been exposed to a tremendous number of recruitment ads with over a half billion spent annually on advertising specific trials, response rates are as low today as they were twenty years ago. What steps are necessary to improve recruitment for cancer prevention research? The first critical step is public education that is not study specific, that addresses the broader benefits of clinical research, and that is collectively embraced by all the stakeholders in clinical research and healthcare. The need for outreach and education is clear: 74% of the public say that they have no “real” knowledge of the clinical research process, and 98% don't know where and how to identify and evaluate appropriate clinical studies. Furthermore, there is an erosion of confidence in the clinical research enterprise that is rooted in many causes, including widespread media coverage of industry missteps and tragic errors resulting in harm to patients. These have contributed to an atmosphere of suspicion and doubt which have left the public troubled and confused.
If we are to engage the public, the stage must be set for the message to be heard and that calls for a national public education media campaign. With pro‐bono support from the international advertising and marketing agency Ogilvy & Mather, a new public service campaign has been developed to educate and win over the public about the importance of clinical research participation. During the campaign's yearlong development process and extensive focus group testing, strong support was expressed for Medical Heroes' easy‐to‐remember messaging and acknowledgement of ordinary people's contributions to public health. During screenings before test audiences, the ads were lauded for their “humanity and emotional appeal,” as viewers declared, “These people are heroes in their own way,” “They've done something great for all of us,” and “I see the benefit of clinical research to society.”
The Medical Heroes campaign has been market tested in 30 sites across 18 U.S. markets by Eli Lilly and Company. In wave 1 of the market test, the control group was established as 12 markets that ran their typical recruitment ads; in 6 comparable markets, concurrent Medical Heroes ads were run as well as recruitment ads — and these markets showed a 38% increase in patient recruitment rates over the control group. The test was repeated and the results of wave 2 showed that response rates to recruitment ads more than doubled in the markets where the Medical Heroes campaign was also run. The campaign met its ultimate goal of providing the public with an increased awareness of research participation and an improved perception of clinical research volunteers.
Implementation of the Medical Heroes national media plan is enabling the campaign to reach over 120 million people quarterly through print, radio and TV ads. In order to dramatically increase the reach and frequency of this important public service message, CISCRP provides the Medical Heroes print, radio and TV ads to all those organizations who contribute to the national campaign — which enables these organizations to run the Heroes ads in their local markets.
This broad public awareness is encouraging more people to seek information about clinical trials prompting a greater need for educational tools in the form of easy‐to‐read brochures, DVDs, and newsletters. CISCRP has a growing collection of educational brochures that take complex questions about clinical research and put them into everyday language. Foremost among the materials is the Education Before Participation series, widely used today by universities, hospitals, clinical research organizations, Boards of Health, civic organizations, and community health clinics to educate people about clinical trials and the need for participation.
Expanding the outreach to minority audiences, CISCRP has also developed customized versions for African Americans and Hispanics, and has translated the brochures for use globally with country‐specific lists of government, disease‐advocacy, and industry resources for residents of Argentina, Brazil, Canada (French speaking), China, Czech Republic, France, Germany, India, Italy, Mexico, Netherlands, Philippines, Poland, Russia, South Korea, Spain, and Ukraine.
By providing valuable information about the benefits and risks of participation, questions to ask, and places to find more information, the Education Before Participation series is a valuable tool for beginning the discussion with prospective clinical research volunteers. Clinical research sites have found that these brochures ease the informed consent process. Beyond the use of educational brochures, there is real value in providing the public with disease‐specific educational DVDs that use the voices and images of real‐life volunteers and healthcare experts. Input from prominent African American and Hispanic researchers and physicians was obtained to help guide the content and earmark culturally relevant issues as well as ethnomedical values and beliefs. The DVD series targets specific areas such as clinical research and cancer, diabetes, mental illness, breathing problems, and heart disease. CISCRP plans to continue the clinical research series with additional disease‐specific educational DVDs.
Such DVDs have great impact when they are being shown on a loop in waiting rooms, and they can also be posted on websites. Most important is providing prospective volunteers with DVDs to be watched at home‐as a tool to help them influence their families and friends who criticize them for choosing to be “guinea pigs.”
Another educational tool is The Medical Heroes newsletter, published by CISCRP every other month throughout the year. The newsletter focuses on subjects that matter to current and future clinical research volunteers, and provides ongoing information and valuable resources. A look at some recent issues offers insight into the newsletter's impact. In one edition, the inspiring story is told of John Cleland, who was successfully treated for metastatic testicular cancer in a clinical trial of the drug cisplatin 36 years ago. In another issue, an article addresses readers' fears about getting a placebo. Another article explains the process of accrediting human research protection programs and why participants need to know about it.
Beyond educational tools, outreach is critical to the learning process. CISCRP conducts events entitled “AWARE for All‐Clinical Research Education Days” in major cities across the United States. These free public programs are the culmination of a 3‐ to 6‐month outreach process. AWARE brings together disease advocacy groups, hospitals and healthcare organizations, educational institutions, and community organizations to provide health information and exhibits, as well as free health screenings. In addition, distinguished local politicians and opinion leaders, physicians and healthcare providers, and clinical research professionals serve as keynote speakers and workshop leaders‐all volunteering their time on a Saturday to help educate the public. In each AWARE location, CISCRP's outreach efforts take many forms. Active contact is made with 30 to 50 community partners, and personal outreach and education is extended to the distinguished members of each city's Honorary Committee. Local churches, community and health centers, and disease‐specific organizations give grassroots support by bringing AWARE's message directly to their constituents.
To date, close to 300,000 people have been impacted by the program. AWARE has put a human face on the people who volunteer for clinical trials while building public understanding of the risks and benefits of participating. AWARE is building a movement at the local level and there is a need to bring this form of outreach to many more communities. When asked whether they are more likely or less likely to participate in a clinical trial after attending AWARE, 75% of the attendees respond, “more likely.”
With all of the information about clinical research that is available online, what the public wants most can be difficult to find. In a CISCRP survey of more than 4,500 online registry users, the public explained that they are not concerned about the volume and sophistication of clinical trials data they can find online. Instead, users want easy‐to‐process trial summaries that help them find trials in convenient geographic locations as well as contact information for those trials.
These eye‐opening findings prompted the development of CISCRP's free public service, www.SearchClinicalTrials.org (SCT). Launched in November 2006, this online tool uses sophisticated technologies to scan the web and compile clinical trial listings and results in one location. But when the online search is too difficult, the public is urged to call CISCRP. Their search request is fulfilled via mail or email and includes an educational brochure as well as contact information for research site staff who can help them decide if the trial is right for them.
Education and outreach are the keys to increasing trust and understanding. Working together across the industry ‐ healthcare, patient advocacy, government, and research professionals ‐can provide the public with educational resources and shift the public's mindset from confusion and concern to recognition and appreciation. From CISCRP's point of view, it's time to say “Thank You” to the millions of people globally who give the gift of participation each year and to stay committed to educating, informing and empowering the public about what it means to be an active participant in the clinical research process. That is the key to effective recruitment for cancer prevention research.
Citation Information: Cancer Prev Res 2010;3(1 Suppl):ED06-02.
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