Deborah Dawson, MSN, RN, is a special nurse with a very special career. As a clinical trials research nurse for the Diversity Enhancement Program (DEP) at Ohio State University’s Arthur G. James Cancer Hospital and Richard J. Solove Research Institute--known as The James--she is making a difference in the lives of many people who, until recently, were often overlooked: minority cancer patients.
Dawson, who is African American, says she wanted to be a clinical trials research nurse because it would enable her to enhance communications and cultural relations between The James and local minority and medically underserved communities in the Columbus area.
“Caregivers who are of the same race or cultural background as minority patients are often able to establish a greater level of trust with them,” she explains. “These patients often feel more comfortable when they can talk with someone who understands their background, customs and beliefs. [In my role] within the DEP, I am able to work with these patients and establish that trust. It’s extremely rewarding.”
The James launched the Diversity Enhancement Program in 2003 to raise awareness of cancer prevention, early detection and treatment in minority communities, with an emphasis on increasing minority participation in clinical trials. One of the program’s early objectives was to recruit more minority staff like Dawson to help patients feel more welcome, at ease and understood.
Historically, cancer patients of all races have sometimes been reluctant to participate in clinical trials--either out of fear of the unknown or a concern that they may be used as “human guinea pigs.” These fears are often magnified among minority patients, who may feel that majority health care personnel do not understand their culture and specific needs.
People who have these misgivings may not realize that clinical trials can offer improved outcomes for cancer patients. This is especially important for people of color, who are disproportionately affected by this disease. For example, according to the American Cancer Society, African-American men have a 20% higher incidence and a 40% higher death rate from all cancers combined, compared with Caucasian men.
The DEP is a multifaceted initiative that is working to reduce minority cancer disparities on several fronts. It has five objectives:
Many health care professionals, like the public in general, tend to have a negative perception of oncology and are often reluctant to choose a career in this field. People tend to link oncology with death and sadness instead of focusing on the research and other programs that are improving the quality of life for cancer patients.
To change these attitudes, DEP staff members work with health system recruiters and students in local health care education programs to improve their perception of oncology and to emphasize the opportunities that exist within this field. Staff members also mentor student nurses through the Columbus Black Nurses Association as a means of sharing their enthusiasm for cancer nursing.
Bringing culturally diverse nurses into the fold is mutually beneficial, according to Melissa Lowe, nurse recruiter at The James. “While nurses who share cultures with minority patients can help put patients at ease, the DEP’s mission also presents a unique opportunity for nurses,” she says. “Nurses with a special interest in reaching out to minority groups find working with the program very fulfilling.”
Because cancer can be so devastating, people naturally fear it--perhaps more than any other disease. They therefore are often reluctant to visit, or seek information from, any facility where cancer is diagnosed and/or treated. The DEP is working to remove the mystery and fear associated with cancer by communicating the advantages of routine cancer screenings, early detection and lifestyle changes throughout the community.
DEP staff members have made presentations at senior centers, public schools, local colleges and universities and to associations of medical professionals. Other outreach efforts have included a seminar series specifically designed for African-American men. The DEP successfully recruited seminar attendees through grassroots outreach to churches, social groups and African-American fraternities.
In addition, the DEP sponsors a monthly hour-long radio program, “It’s All About Health,” which airs on a local gospel station. Hosted by William J. Hicks, MD, medical oncologist and co-director of the DEP, the show addresses cancer-related topics, including cancer types, cancer prevention and screening. Dawson, a regular guest on the show, presents information about specific clinical trials and how individuals may participate, as well as the important roles research nurses have in the clinical trials process. On another station, the DEP sponsors “Medical Minute,” a series of 60-second cancer-awareness messages.
“We want to make the public aware that what works for Caucasian patients may not work for African Americans and other minorities--and vice versa,” says Dawson. “Data collected during clinical trials can help determine different patients’ reactions to specific drugs and methods of treatment and improve outcomes for everyone.”
Dawson has received many calls from listeners who have heard the radio program and want more information. The show has prompted people to seek more details about the trials, the criteria for participation, the length of the studies and how the research can benefit them. “The radio program has helped listeners to link names and personalities with The James,” Dawson adds. “It has been a great tool for communicating with the public.”
To help staff members at The James better understand the unique cultural needs of their patients, the DEP provides cultural competency training to boost comfort levels and enhance communication among caregivers, their patients and patient families.
For example, it’s helpful for hospital dietitians to understand why many African-American patients add animal fats such as pork grease to their vegetables and greens during preparation. Even though the practice is unhealthy, this cooking method dates back to a time when slaves received the leftover ingredients that were not used to prepare their master’s meals.
While some topics, like the origins of dietary and other health-related customs, can be uncomfortable for some minority patients to discuss with health care providers, cultural competency training enables nurses, physicians and others to explore and discuss lifestyles and habits of people from diverse backgrounds so these professionals are better prepared to approach and discuss treatments and alternatives with their patients.
Clinical trials are discussed in every outreach program the DEP sponsors. For example, during Breast Cancer Awareness Month, staff members are often asked to present information to local church groups, women’s clubs and government organizations. The presenters always mention cancer clinical trials and the need for greater minority participation.
The DEP also has several ongoing outreach programs, such as monthly presentations to individuals at Maryhaven, an addiction treatment and mental health facility in Columbus. Although the main discussion may focus on a specific type of cancer, presenters will mention clinical trials as an opportunity.
The DEP’s “Grandma’s Hands” program also reaches out to minorities and medically underserved individuals. Funded by a grant from the Columbus affiliate of the Susan G. Komen Breast Cancer Foundation, “Grandma’s Hands” includes 10 volunteer grandmothers who have agreed to help present breast cancer awareness programs to women in their communities.
The idea of using grandmothers to communicate the clinical trial message originated from the words of a popular song that talks about the wisdom among the grandmother population and how these women can influence their families, friends and communities. During the “Grandma’s Hands” sessions, a DEP presenter talks about breast cancer, cancer prevention and the opportunity for cancer patients to become involved in clinical trials.
The presentation is followed by a group activity selected by the grandmother who hosts the session. One grandmother chose the activity of creating photo collages while another helped her group create quilt squares. “Grandma’s Hands” sessions are held in the hosting grandmothers’ homes, in participants’ homes, and at churches and other locations. The DEP has conducted these sessions, for example, at area schools and government offices. The DEP provides all invitations, snacks and any needed supplies.
In 2004, the DEP identified and educated 500 women through the “Grandma’s Hands” sessions. While the program has been targeted mostly toward African-American women, DEP planners hope to expand it to reach other medically underserved community segments.
The DEP has created educational tools for use in “Grandma’s Hands” sessions and other outreach programs. Participants receive awareness pins, designed by Ohio State University, that sport the red, black and green found in the flags of several African countries, along with pink to signify breast cancer awareness. Black represents the African people, red is a reminder of past bloodshed and green foretells the future and the hope represented by new programs that will help eliminate health care disparities.
These pins are great conversation starters. The program leaders ask participants to accept the pins with the promise that they will help spread the word about breast cancer prevention and the important role of clinical trials.
The James has also developed a video that staff members use to help recruit minority cancer patients for clinical trials. The video includes testimonials from several minority patients who have benefited from their participation in this type of treatment.
Many minority cancer patients are also suffering from other health problems, such as diabetes, high blood pressure, heart disease or kidney disease. Patients with these pre-existing conditions are usually ineligible for cancer clinical trials, which limits the number of minority patients who meet the criteria for this important clinical research.
Through regular communication, the DEP is encouraging researchers at The James to design studies targeted to patients who have health problems in addition to cancer. Developing protocols for patients with pre-existing conditions to participate in cancer trials would provide more opportunities for African Americans and other minorities to become involved in critical studies.
Although the DEP is still in its infancy, planning is underway to expand the program. For example, staff members are considering initiatives to reach more Latino, Asian and Native American populations. The DEP is also looking at ways to reach more African-American men through an existing program called the Men’s Health Initiative. This project will be expanded to provide education and screening information for all types of cancer to large groups of African-American men.
“Historically, the American health care system has not been set up to provide education to keep minority patients well,” Dawson says. “Education is an area where minority nurses and other health care professionals can really make a difference in communicating with minorities and the underserved in our communities and in helping to improve cancer outcomes for current and future generations.”