Dialogue: Community Engagement to Reduce Disparities
A dialogue among two researchers and a patient advocate who discuss the importance of how community engagement can bring about real change in reducing disparities.
Marvella Ford, PhD, David Buchanan, DrPH, and Sanford Jeames, DHA work with community partners on building innovative strategies to address health disparities and improving quality of life.
Dr. Marvella Ford oversees the effort to address our state's critical cancer disparities through community outreach and education. Ford and her team are working with minority leaders throughout the state to build bi-directional, trusting, and long-lasting partnerships. The establishment of these partnerships now plays a critical role in the ability of Hollings Cancer Center investigators to tailor culturally and contextually knowledgeable interventions and implement them in communities that previously did not welcome clinical research.
Dr. David Buchanan is a full professor of Public Health, Chair of the Department of Health Promotion and Policy, and director of the Institute for Global Health at the University of Massachusetts at Amherst. His research interests lie in analyzing the ethical foundations of public health approaches to improving population health and quality of life. He has focused on the role of public health policies and programs in promoting justice and expanding human autonomy as prerequisite to improving population health.
Dr. Sanford E. Jeames coordinates the Health Science Program at Eastside Memorial High School and serves as a faculty member at Huston-Tillotson University in Austin, Texas. He assisted in the formation Men of Color Health Awareness (MOCHA) program in Springfield, Massachusetts, and served on the Steering Committee. He was appointed to the Health Disparities Work Group for the Mass Comp Cancer Control Plan, and served as Co-chair of the Prostate Cancer Work Group. He is currently a patient advocate and protocol reviewer with the National Cancer Institute (NCI) Special Emphasis Panel.
Sanford: Thank you very much Dr. Buchanan and Dr. Ford for taking the time to be a part of our discussion. Let's begin with a few questions about your focus in cancer research. How have disparities been impacted by your research?
David: My main area of research is public health ethics. I'm interested in defining ethical standards for implementing community-based programs. The communities that face health disparities have a right to be involved with decisions that affect their quality of health services and their social conditions. My objective is to find model programs that will engage the community to enhance community power.
Marvella: In my research, my colleague and I used data that documented that African-Americans in South Carolina with early-stage lung cancer are 43 percent less likely than European Americans in South Carolina to receive lung cancer surgery. This was really a significant finding because, at this early stage of cancer, surgery is done with curative intent. If African-Americans with early-stage lung cancer had surgery, they could have had a higher survival rate.
This finding led my team to develop an NIH-funded patient navigation intervention for African-Americans with early-stage lung cancer. The goal is to increase this special population's surgery rate.
Sanford: What do you consider to be the most significant advancements in your research area, particularly around patient-centered care?
David: I'm most excited these days about what I call new developments in primary prevention. There's lots of concern about the effects of overeating and smoking and other kinds of behavioral factors that do eventually lead to the development of cancers. From a public health perspective, we're very interested in trying to prevent these types of cancers. The most exciting programs have helped people to make decisions on such things as weight control and smoking cessation.
I'm encouraged by programs that are focused on helping young people develop impulse control and that has tremendous implications across a spectrum of things. Showing people they can make meaningful choices and create a positive future about how they live can be very effective in preventing a range of undesirable outcomes.
Marvella: The growing focus on the team science approach is really helping to identify potential solutions to cancer disparities. We need to create scientific teams that have representation from different scientific areas like basic science, clinical science, and population sciences or behavioral sciences. In genetics research, there have been some major advances in cancer diagnosis and treatment. However, there are racial and ethnic differences in participation in genetics research. This factor presents a wonderful opportunity to employ community-engaged approaches to develop interventions which will improve rates of participation in cancer genetics research.
Sanford: There continue to be health disparity gaps. Why do you think the disparity gaps continue, even though it appears that an effort has been made to involve more community-based research?
Marvella: If you look at data going back 50 or 60 years, significant strides have been made to improve health outcomes for members of all racial and ethnic groups. The problem is improvements are not occurring at the same rate among racial and ethnic minorities as in the general population. This results in a continued gap over time.
Strategies are needed to lessen the gap, given our legacy. Structural issues—unemployment, poor housing, lack of health insurance, access to high-quality education, and availability of high-quality foods—as well as the biologic and behavioral issues contribute to disparities. One person cannot address the different issues, but a real team approach of scientists and policymakers will effect change.
If a health care clinic opens in a community but there's no attempt made to establish a presence in the community, engage in the community, or participate in community activities, the use of the clinic may remain low even though the need for health care in the community is great. It is important to engage in partnerships with various community members, cancer survivors, politicians, and scientists.
David: When you look at these things from a systems perspective, many of these issues relate to policymakers and go well beyond the science of these issues. It takes community members to engage with their elected politicians to make differences in the social determinants of health—improving the quality of education, improving employment rates, and reducing poverty.
Sanford: I had an opportunity to work with Dr. Buchanan on a program, Men of Color Health Awareness (MOCHA), which is a community-based initiative. Dr. Buchannan, what brought you to work with a community-based organization like MOCHA?
David: Throughout my 25 year career in the field, I've been concerned with finding ways to engage the community. My goal is to strengthen their senses about the control people have over the conditions that affect their lives. MOCHA is a wonderful example of something that's grassroots driven and community driven. People from the community are no longer accepting the disparities and want to do something about it.
Innovative strategies have been developed to address health disparities relating to chronic disease control amongst older African-American men. So my interest in the program as an academic and researcher is to assist them in documenting the successes of the program and the differences made in the community, especially for funding purposes.
Sanford: What do you think is the value of community-based research, especially now because it is considered to be in some circles nontraditional research?
Marvella: One of the questions that community groups are often asked is where is the data to show the impact of your program? Over the last 10 years, we have been conducting evaluations on community members regarding a radio broadcast entitled, "Closing the Gap in Health Care for the Underserved." The evaluation includes a series of 12 focus groups in three different counties. Community members are asked their opinions about the broadcast, health concerns in relation to the broadcast, and whether the broadcast is fulfilling effective health communication. The data produced from the analysis of our focus groups could help broadcasters obtain grants to keep their programs on the air.
What's important is that community-based research engages community members with topics that are of interest. That will make the partnership very rich from the beginning. When working with a community that's interested, excited, and engaged, they need the tools to be innovative and creative in disseminating the information. They see and understand the impact of chronic diseases, particularly cancer in their communities. Some partners have educated their constituency at family reunions, regional meetings of their fraternities or religious organizations. It's very exciting to have this partnership and feel that each person in the partnership is bringing something significant to the table that's been highly valued.
Sanford: When they hear the word disparity many people think about race. What exactly do you consider to be disparities? Is it anything beyond race?
David: Race is only one disparity, but there are disparities by the level of education, employment, gender, and sexual orientation. I think a disparity by race deserves the attention it gets because of the tragic legacy to overcome. That's not to say that it's the only disparity that needs to be addressed, but it certainly is something that should continue to be a priority.
Marvella: There's a lot of discussion about what race means. At the DNA level, all individuals are 99 to 99.5 percent identical. Racial identification is based on how people look and how they are categorized, which results in different levels of access to opportunities. Educational, employment, and socioeconomic factors are impacted by access to health care, adequate housing, good education, and high-quality nutrition, which in turn impact health outcomes. Sometimes we call them racial disparities when we're really talking about socioeconomic status.
Sanford: Why is disparity such an important topic in research?
David: It's an important topic because it speaks to basic human values that all humans have an inherent dignity and deserve respect. When you see these social structures that are unnecessary and a violation of our fundamental sense of justice, we cry out for change.
Marvella: We are one nation but we have different subgroups within our nation. What happens to one subgroup can impact the entire nation.
Sanford: How does health communication—communication between researchers—play a role in reducing disparity?
Marvella: Once we document an issue such as African-Americans in South Carolina with early-stage lung cancer are 43 percent less likely than European Americans with early-stage lung cancer to receive surgery, how can we frame it so that it has meaning to the people who will receive it? The goal of health communication is to increase knowledge and awareness of health issues; to influence perceptions, beliefs and attitudes; to promote action; to reinforce knowledge, attitudes, or behavior; and to show the benefit of behavioral change.
David: There are real people with real lives that are being affected by these problems and it's really important for people to speak up to their elected officials about the disparities that they're experiencing. As academics, an important role that we can play is to help facilitate and speak directly to communities about programs that worked and will make a difference.
Sanford: Is it possible for a nonresearcher to do something to reduce the health disparities gap?
Marvella: Nonresearchers can engage in many activities to health reduce disparities. They can share the knowledge that they've gained with others in their communities. They can participate in research studies and encourage others in their communities to participate. They can work in an advisory capacity with research teams. They can also develop their own projects. There is funding for community-based organizations to receive funding to carry out their own projects. There's so much creativity and passion and intellect in the community filled with great ideas. Talking with politicians is a very key thing and writing letters, showing displeasure with actions by politicians, or thanking politicians can also have a big impact.
David: Community health workers can make major contributions in the area of patient navigation. These patient navigators and community health workers see the real issues and are in touch with what's really happening in people's lives. They have so much to share with researchers in terms of what will make a difference in improving the quality of care. People who understand those issues feel passion and are great community organizers and advocates for real change.