Disseminating Research Findings to the Community: Breast Cancer Advocates Conduct Education Forums

Introduction

All persons in a community deserve the right to access accurate information in order to make choices for their own health and the health of their families. People also have a right to understand scientific research results. When someone else is interpreting that research, however, the result may be information that is biased. Typically the lay public receives information about the latest scientific research through mass media rather than peer-reviewed journals and scientific conferences. Mass media often presents a condensed, biased version that does not always give the public accurate information about the science. Peer-reviewed journals, on the other hand, can be too complex for the average person to understand.1 Scientific conferences are not always open to the public, are expensive to attend and are not geared for the lay audience. Therefore, there has been limited access to reliable scientific information for the lay public.

Direct access to researchers to hear about their work and their results is empowering. Access to valid, meaningful, and understandable data is a fundamental principle of environmental justice, which exists when populations of people have full access to information about their environment and/or health. Community based prevention efforts must involve members of the community itself and utilize adult learning principles. Adults are motivated to learn by the need to solve problems. They need to know why they are learning and they must be actively involved in the learning process.2

In the greater Cincinnati community there were little to no opportunities to meet face to face with those researching potential links between the environment and breast cancer. There was an injustice in that there were few outlets available for the public that would allow them to hear from multiple researchers to discuss ways for risk reduction or prevention of this disease. An innovative approach to achieve environmental justice for the lay public is through educational forums like those conducted by the Cincinnati Breast Cancer and the Environment Research Centers (BCERC) held from 2003–2010. The target audience for these forums was the lay public, which included breast cancer survivors, health care professionals, researchers, and interested members of the community. These forums offer an alternative method for getting scientific information to the lay public. In addition, the audience could potentially use the information from the forums to influence environmental justice through activism and policy change. This model has implications for groups across the nation as well as those in the local communities that were directly involved with the studies.

Background: The Breast Cancer and the Environment Research Centers (BCERCS)

The BCERCs were a network of four national centers funded from 2003–2010 by the National Institute of Environmental Health Sciences (NIEHS) and the National Cancer Institute (NCI) to support transdisciplinary teams of scientists, clinicians, and breast cancer advocates to study the impact of prenatal-to-adult environmental exposures that may predispose a woman to breast cancer.3 The four center locations were the Fox Chase Cancer Center, Michigan State University, the University of California at San Francisco, and the University of Cincinnati (UC). Each of the four centers had a Community Outreach and Translation Core (COTC) tasked with ensuring that the views and concerns of the breast cancer advocate community were heard and that the research findings generated by the centers were disseminated to the public. Members of the Cincinnati COTC represented the lay public target audience.

Breast cancer is the most common type of cancer in women and the second leading cause of cancer death.4 A unique aspect of breast cancer survivorship is the large number of women who are dedicated to involvement in community advocacy. Many breast cancer survivors become active advocates for themselves and their communities, and they seek accurate information regarding the disease. Women also tend to be the health care decision makers in families5 and they actively seek usable and accurate health care information.

Many survivors feel the environment may be related to their disease because fewer than 10% of breast cancer diagnoses are traced to genetic factors.6 There is also a wide interest in scientific research that looks at the links between the environment and breast cancer. Partnerships between these advocates and researchers promote a better understanding of environmental causes of disease7 and there have been several organizations that have spearheaded efforts to investigate potential environmental links to breast cancer across the country, such as in Long Island, New York; Marin County, California; and Cape Cod, Massachusetts.8 These advocates urged for increased funding and an expanded role for advocate involvement to conduct the necessary research. The BCERCs were funded largely due to the work advocates had done over the past two decades.

Community involvement and collaboration are cornerstones of public health action. Community advocates know the importance of providing feedback on research results back to the community that has been involved in research studies through public forums, publications, and media sources.9 As such, advocates were a vital component of the BCERCs network, as they were on the committees that developed educational forums and programs to disseminate research results to lay audiences. However, in our community, the majority of such feedback and education focused on either the screening, detection, and/or treatment of the disease. There was a lack of information available about the causes of breast cancer and its potential link with the environment. There was a need in our community for the lay public to understand the research that was being done to prevent breast cancer and ways to reduce their individual risk from developing or recurrence of the disease. These advocates represented the community's concerns and addressed topics that focused on this need for new information.

The Cincinnati COTC developed the annual educational forums with the help of volunteers who represented several community breast cancer organizations. These groups were diverse in their membership and missions and had experience with dissemination of relevant breast health information, which fit well with the focus of the research. Organizations included the Breast Cancer Alliance of Greater Cincinnati (BCA), an advocacy organization; Sisters Network Cincinnati, an African American survivorship organization; Pink Ribbon Girls, a networking group for young breast cancer survivors; and Patterns, a local faith-based support group.

One of the specific aims of the COTC was to create public education programs that effectively communicated recent research findings. COTC members were volunteers recruited by the COTC Principle Investigator (PI) who was an epidemiologist from UC and had experience working with community groups. UC provided an infrastructure to coordinate forum logistics. COTC members sought to develop forums with their constituent members' interests, literacy levels, and accessibility in mind.

Discussion: Cincinnati COTC Educational Forums

COTC members planned six annual forums that were conducted between 2005 and 2010. The sources for the COTC funding included the BCERCs grant and community donations. The University of Cincinnati covered the cost of the forum facility, audiovisual equipment, and the processing of the continuing education unit (CEU) application. The audience, speakers, format, and logistics were factors that influenced the planning process. Participant feedback was elicited via written evaluations at the end of the each forum. Data from the evaluations were summarized, evaluated by the COTC and incorporated into the next forum. Potential attendees were invited using forms of communication that were in place with the partnering community organizations and health care facilities, such as mailing lists, Web sites, email listservs, and brochure distribution sites. Television and newspaper ads were expensive and the least successful in attracting attendees. Therefore, they were not used for marketing the more recent forums. Targeted listservs, brochures, and eventually word-of-mouth seemed to be the most effective means of eliciting attendance at the forums.

The committee anticipated the needs of the target audience and provided various learning opportunities. Adults need learning approaches that match their background and diversity.10 The importance of speaking directly to the audience was emphasized and presenters were asked to highlight a call to action at the end of their presentations. Opportunities were provided for networking, answering specific questions, and inclusion in a community experience. Attendees were given a packet of materials that included PowerPoint handouts of each presentation, a glossary of terms, and additional resources. Pamphlets, booklets and newsletters were available on an information table. Presentations were videotaped and posted on the Cincinnati BCERC Web site where they could be viewed again by participants and those unable to attend. Key points of each presentation were also posted on the Web site. Summary and key points were published in the BCA newsletters. Approximately half of the audience was made up of health care professionals and so nursing CEUs were provided for their professional development.

The COTC used many sources for soliciting speakers and topics appropriate for a lay audience. COTC members canvassed sources such as Web sites, chat groups, discussion boards, popular press, and non-academic sources to find out who was writing about health and environmental concerns. COTC members had a unique access to information because of their wide network of connections with other breast cancer survivors and breast cancer organizations. Members attended the annual national BCERCs conference and this also provided them with potential topics and speakers. Several COTC members had completed the National Breast Cancer Coalition (NBCC) science training course, Project LEAD^® (Leadership, Education, and Advocacy Development), and they had participated in the Project LEAD^® grads program, which offers an online community for information sharing. Several advocates participated in peer review of breast cancer research in the U.S. Department of Defense Congressionally Directed Medical Research Program (CDMRP). This program hosts the Era of Hope Conference in which the funded research is presented by the investigators. Some COTC committee members participated as advocates in the planning and co-chairing of symposia at this conference. Committee members also attended national conferences about breast cancer such as the San Antonio Breast Cancer Symposium and the American Society of Clinical Oncology Conference. Lastly, forum evaluations provided the committee with additional ideas for topics and speakers to consider for future events.

Speakers were selected from within the BCERCs and outside of the local research community. Subject matter experts presented a variety of environmental topics. All speakers were asked that presentations be delivered with the target audience in mind and conclude with a call to action. Some speakers focused on measures individuals could take, while others emphasized activism and public policy. Individual calls to action included steps the attendees could use to live a healthier lifestyle; such as using databases where they could find information about reducing their exposure to chemical contaminants, healthy food choices, and supplements. Broader calls to action encouraged attendees to move beyond science and become involved in influencing legislation to regulate chemical use and safe cosmetics. Attendees were also encouraged to become involved as advocates in all levels of the research process.

Nationally known speakers provided the benefit of a wider and different perspective than those involved in the local research. Having national speakers also provided an opportunity for networking between the Cincinnati COTC and speakers with common interests outside of the local group. Local speakers were less costly than national speakers and afforded attendees the opportunity to engage with local researchers. When the forums began to include panel presentations, panel speakers were chosen for expertise in their field so that they could answer in-depth questions from the audience. The COTC anticipated possible questions and prepared the panel speakers in advance of the presentations.

The format of the forums was a four-hour time frame that included presentations by experts, a keynote speaker, and question and answer sessions. Advocates were an integral part of the forum program because they ensured that a human dimension was incorporated into the research process.11 Advocates put a face on the disease for many in the audience, including the researchers in attendance. Each speaker was introduced by a breast cancer advocate from the Cincinnati BCERC and local researchers acknowledged the importance of the work of advocates within the BCERCs. In these presentations expert speakers presented about a variety of environmental topics related to breast cancer. Another component of each forum was an update of the research conducted by the Cincinnati BCERC. The research process was explained, including details on the application process, how the research was funded, and how research findings and results were disseminated. Updates were given by researchers directly involved in the biology and epidemiology projects within the Cincinnati BCERC.

COTC members had a wide variety of experiences in learning about research. This knowledge was used in the development of the forum format. Following evaluation feedback requesting more interaction with researchers, COTC members added panel discussions and poster sessions to the forums in 2009. The panels met specific needs that individual presentations did not meet; for example, they provided additional practical information using an interactive style. Panels were made up of a variety of experts, advocates, and health care providers, each of whom approached a topic from a different perspective. The 2009 panel was an open discussion about talking with daughters about breast health. The panel was moderated by a breast cancer advocate and included a breast surgeon, genetic counselor, and developmental psychologist. In 2010, the panel of experts summarized key contributions from the Cincinnati BCERC research. Panelists included epidemiologists, breast cancer advocates, a pediatrician, and a molecular toxicologist who have been leaders in the Cincinnati BCERC. Poster sessions provided another opportunity to educate the audience on the research process and they were positively evaluated by attendees. Posters from local researchers as well as those from national BCERC meetings were showcased. Sessions were introduced by explaining the format and purpose of a poster session, and then time was allotted for the audience to visit the various posters. Poster authors were available at their posters to discuss their work. COTC members were available to guide audience members in visiting the posters and asking questions of the researchers.

Logistics seemed to have a positive impact on the forums. For example, the forums were held in the spring each year on a Saturday in a central location with easy access and free parking. A fee of $15 was charged for attendance each year to defray the cost of food. There was no charge for CEUs. The forum program and format was such that a person did not have to attend each year to understand the topics presented. Dates were carefully considered so as not to interfere with national and religious holidays and other breast cancer events in the community. A full breakfast and mid-morning snacks were provided which allowed time for interaction in an informal manner among attendees and between attendees and speakers. These interactions were evaluated very positively by attendees and so they were increasingly included in the program. The COTC members had the opportunity for informal meetings with speakers before or after each forum. These meetings allowed the committee to better understand the speakers' work and achieve a greater insight into topics affecting forum audiences. Additionally, they provided those speakers with an opportunity to learn more about how advocates were involved with the Cincinnati BCERC.

The total number who attended the forums over the six years was 680, with approximately 100 people attending each event. Approximately half were health care professionals and the other half included breast cancer survivors, breast cancer advocates, and researchers. Participants were asked to complete a two-page evaluation at the conclusion of each forum to help the COTC prepare and plan for future events. Over the six years, 396 evaluations were completed, representing 58% of total attendees. Items rated by participants on a 5-point scale included the effectiveness of the speakers (3.8–4.8), personal usefulness of presentations (4.0–4.7), and likelihood of attending future educational forums (4.6–4.9). While evaluations indicated participants would be likely to attend future forums, the majority of attendees came to only one or two events over the six-year period.

Most evaluations were favorable; however, there were a few negative comments covering various aspects of the program. Some of the written comments from evaluations stated: “Quite informative; variety of topics; presented in a manner that was easily understood,” “Poster session—great to be able to speak with scientists,” “Very effective; valuable to hear everyone's questions and different opinions and answers,” and “Thanks for the information; I will report this to my breast cancer support group.” Health care professionals indicated they were able to bring useful information back to patients, co-workers, and staff. One health care professional stated: “As a nurse and health educator this BCERC site and conferences are my sole source of reliable current info about environmental studies and outcomes.”

Conclusions

The Cincinnati COTC had been tasked with disseminating research results in the community. This was a challenge in that there were few informational channels that were available to the lay public. The COTC members were passionate about the need to effectively communicate scientific research, therefore, a new vehicle was developed to share information about the environment and breast cancer that could be translated into concrete action items that the attendees could use to make healthier choices in their daily lives and to effect public policy.

The annual education forums were a successful vehicle for disseminating study results and current topics of interest. This was accomplished by speakers giving insightful presentations and ensuring that they made the presentations relevant by speaking to their audience in a manner that was understandable. In addition, the audience was given the opportunity to respond back to the speakers by asking their own questions which served to enhance the communication between speaker and audience. For those who could not attend the forum, key points and videotapes of the presentations were posted on the Cincinnati BCERC Web site.12 The location and venue were accommodating to the attendees, both in time of year and the physical site itself. The format of the program evolved to meet the needs of the attendees who wanted more interaction with researchers. This included the addition of panel discussions and poster presentations. While these programs were run largely by volunteers, it is important to remember that adequate funding was essential to cover program expenses.

The annual educational forums improved environmental justice in the community by effectively providing access to recent research findings. In addition, it gave Cincinnati breast cancer advocates the opportunity to volunteer their time, energy, and passion to actively support and participate in the work of the BCERCs.

In all, the COTC of the BCERCs had six years of experience in planning and presenting scientific research to our community through an annual educational forum. These experiences can serve as a model for other communities to disseminate information for breast cancer and other diseases, as all citizens have a right to have information about their health in understandable terms from reliable sources.