Show Summary Details

Page of

Printed from Oxford Research Encyclopedias, Communication. Under the terms of the licence agreement, an individual user may print out a single article for personal use (for details see Privacy Policy and Legal Notice).

date: 15 June 2021

Creating Authentic and Lasting Community Relationships to Enhance Awareness and Understanding of Cancer Researchfree

Creating Authentic and Lasting Community Relationships to Enhance Awareness and Understanding of Cancer Researchfree

  • Linda Fleisher, Linda FleisherCenter for Injury Research and Prevention, The Children's Hospital of Philadelphia & Patient Resource Education Center, Fox Chase Cancer Center
  • Evelyn GonzálezEvelyn GonzálezDepartment of Community Outreach, Fox Chase Cancer Center
  •  and Armenta WashingtonArmenta WashingtonDepartment of Community Outreach, Fox Chase Cancer Center


Building and sustaining relationships fundamentally requires mutual trust based on authentic and reciprocal communication. Successful academic and community partnerships require a deep understanding of the needs of all stakeholders facilitated through dialogue and ongoing communication strategies. This dialogue is especially crucial to address health disparities and bridge the divide between academics and other professionals and the communities they serve. Innovative and sound health communications and community engagement approaches can help to address this divide. For those working with communities to improve health, Community Based Participatory Research (CBPR) principles can serve as a compass to guide those efforts of building on the strengths and resources within the community and ensuring co-learning to address social inequities. Moreover, using innovative and interactive health communication strategies, such as community forums, photovoice projects, and the development of culturally sensitive and relevant messaging, can empower and engage the community, facilitating long-lasting relationships between the academic institutions and communities that ultimately address the unique concerns and values of those most in need.


  • Health and Risk Communication
  • Communication and Culture
  • Interpersonal Communication


A disproportionate amount of the cancer burden is carried by racial and ethnic minority communities, and understandably significant challenges remain to be addressed to increase the knowledge, interest and engagement of these communities in cancer research. Across the spectrum of cancer research ranging from prevention and detection, (including collection of biospecimens), cancer treatment and survivorship, barriers to participation persist (Baquet et al., 2008; Weinberg, 2008; Colon-Ontero et al., 2008; Gadegbeku et al., 2008; Katz et al., 2008; Shavers et al., 2001; Mills et al., 2006; Todd et al., 2009). Specifically, minority participation rates in treatment clinical trials are significantly lower than that of Caucasians. Although up to 20% of minority cancer patients are eligible to participate in clinical research, only 3% to 5% actually volunteer to participate (Comis & Crowley, 2006). A four-year review of FDA-approved clinical trials testing cancer drugs revealed racial and ethnic minorities represented less than 10% of participants (Evelyn et al., 2001). These participation rates are not reflective of the number of racial and ethnic minorities in the United States nor are they proportional to the cancer incidence rates among minority populations (Stewart et al., 2007).

In addition to the organizational and provider barriers that impact research participation, a cultural divide exists between the community needs, knowledge, and attitudes about research and the investigator’s understanding of these issues. Bridging this cultural divide requires dialogue and understanding between and among these two important stakeholder groups. For example, some investigators may not realize the importance of including diverse populations in their research projects. Others may recognize the need but may not know how to design culturally tailored health communication messages or how to describe their research to enhance recruitment. Yet others may have had a negative experience and stopped trying, but ultimately it is the responsibility of investigators to ensure inclusiveness. Innovative and sound health communications and community engagement approaches can help to address this divide.

The Communities as Partners in Cancer Clinical Trials report calls for enhancing local community support for cancer research (Michaels, Seifer, ENACCT & CCPH, 2008). Community Based Participatory Research (CBPR), a collaborative approach to research that equitably involves all partners in the research process and recognizes the unique strengths that each brings, is one such approach. The key principles of CBPR include (Israel, Schulz, Parker, & Becker, 1998):

recognizing the community as a unit of identity

building on strengths and resources within the community

facilitating collaborative partnerships in all phases of the research

integrating knowledge and action for mutual benefit of all partners

promoting a co-learning and empowering process that addresses social inequalities

involving a cyclical and iterative process

addressing health from both positive and ecological perspectives

disseminating findings and knowledge gained to all partners

The emergent application of CBPR principles to the development of health communication programs and messages, particularly in cancer control (Shirazi et al., 2015; Katz et al., 2015; Lumpkins et al., 2013; Treiman et al., 2017) highlight the importance of building long-standing relationships between the academic institution and communities and providing health communication programs that meet the unique needs of those communities.

Community Engagement in Research—Fox Chase Cancer Center (FCCC)

Building a long-lasting, authentic partnership requires an investment of time and resources to ensure a deep appreciation for both the assets in the community as well as the challenges that are faced. It also requires a long-term commitment staying involved and remaining an active partner. All too often the sentiment heard in disenfranchised communities is that institutions come in to the community but then leaves once they have completed their projects. At Fox Chase, we have committed to work with the community over the long term and ensure we provide services as well as support local businesses and community events.

Over the course of almost 10 years, Fox Chase Cancer Center’s Neighbors Initiative has evolved from concept to a bi-directional, authentic partnership with an underserved community who lives in close proximity to the comprehensive cancer center. This transformative process included four phases that are described in detail in Figure 1. The process included careful planning, the development of programs and services in collaboration with the community, as well as strategies to maintain these efforts over time. The programs were designed with health communications and public health best practices and focused on the narratives and stories of the cancer journey from the community perspective.

Figure 1. Description of the Phases of the Neighbor’s Initiative.

Phase I: Building Authentic Relationships and Partnerships

Recognizing that building and sustaining strong relationships with underserved communities requires considerable investment of time and ongoing commitment, we chose to focus on communities closest to our cancer center to allow us to build enduring partnerships and provide needed services.

The Community Outreach team identified an area that encompasses 11 zip codes representing the Philadelphia communities closest to Fox Chase Cancer Center (FCCC). In the aggregate, 55.8% of these residents are African American/black, 12.4% are Hispanic/Latino and 4.7 are Asian. However, each zip code is unique and both racial and ethnic breakdowns vary; for instance, one zip code is 97% African American/black while another is only 6.5%. Other groups with significant population in these zip codes include Hispanics/Latinos and Asians. In addition, these racial/ethnic minority populations are heterogeneous. For example, a significant number of Muslims and African-Caribbean immigrants reside in the African American zip codes. Philadelphia County (where most of the Neighbors Initiative is located) leads the state in overall cancer burden (Pennsylvania Cancer Incidence and Mortality Report). In comparison to the United States, Pennsylvania mortality rates show that lung cancer continues to lead; however, colorectal cancer is second followed by breast and prostate. In addition, it is well recognized that social determinants have a significant impact on health, and this community, although well established, has major areas of lower educational attainment and income. For example, the population with a high school education or greater ranges from 53.2% to 80.4% and poverty levels range from 1.1% to 36%. Additionally, other non-English languages spoken at home range from 6% to 40% in these communities. Because this area is close to Fox Chase and represents an area of need, we decided to concentrate our local outreach and education efforts there with the intent to increase knowledge and access to care with the overall goal of reducing cancer health disparities.

Early on we established a Community Advisory Council (CAC) comprising stakeholders and key informants identified through community visits and ongoing education and outreach efforts. Using CBPR principles, the CAC worked hand in hand with the Fox Chase (FCCC) Community Outreach team to design the Neighbors Initiative and conducted a community asset map to identify community organizations to build ongoing partnerships. Through meetings and attendance at local events, we used the opportunity to share the educational and clinical services provided by FCCC, find out more about their organization, as well as establish a face-to-face rapport to build authentic and enduring relationships in the community. It also gave us the opportunity to identify community space and businesses that we could solicit for events. One of the critical components of the initial partnership development was our ability to bring needed services to the community and ensure that we had ongoing funding to provide these services, including a mobile mammography program (with funds for low-cost and free mammograms) as well as educational programs and resources. Over the course of this decade-long initiative, we included a high-risk mobile prostate cancer screening pilot program and now have included a rapid skin screening and head and neck screenings along with a series of cancer education programs focused on specific cancers and/or research priorities. These services were funded through institutional support, foundation funds, Medicaid providers and federal/state grants. Funding for our Neighbors Initiative was provided by Fox Chase Cancer Center and the National Cancer Institute’s Center to Reduce Cancer Health Disparities. The financial support enabled us to build infrastructure and develop cancer education programs. Through our community cancer screening program, we brought low-cost and free cancer screenings and culturally tailored cancer education to local community-based organizations, houses of worship, and community functions. These services enabled us to continue our presence in the community by sharing life-saving prevention messages and screenings.

Phase II: Building Bridges and Creating Dialogue Between Researchers and the Community Around Issues in Cancer Research

As these foundational relationships were established and cancer screening services and education in the community were ongoing, programmatic efforts became more focused on participation in research across the continuum, from prevention to treatment. A series of focus groups were conducted within the African American/Black community to more fully understand and appreciate the concerns of this community around cancer research and guide the development of health communication projects.

One of these projects, called SOURCE (Strengthening Our Understanding of Research through Community Engagement) was funded through a federal grant and was designed to bring cancer researchers and community leaders together in a safe and open setting to improve dialogue about cancer research. This project also facilitated candid conversations about the barriers and facilitators of underrepresented groups’ participation in prevention, treatment and biospecimen research.

Implementation of SOURCE relied on our Community Health Educators (CHE), and CAC members who identified community members to help make-up the project Steering Committee. The launch of the project began with a dinner at a local restaurant with members of the committee and fellow researchers as well as the president of FCCC. We used the book, The Immortal Life of Henrietta Lacks (Skloot, 2009) to bridge the discussion between community members and bench scientists. Members of the CAC noted their appreciation of having an opportunity to interact with other faculty and senior leadership—sending a powerful message that we are “all in.” As part of our project we also created several opportunities to bring the advisory members to FCCC for meetings and to visit our biorepository facility. The purpose of the later exercise was to reduce anxiety about what occurs within such a facility, to dispel misinformation and myths and to allow members to ask questions and to learn how samples are collected, processed, stored, and patient information protected.

Now, with the CAC more knowledgeable and empowered, additional community forums were conducted, which were often co-led by a member of the Steering Committee and the research staff. Each community forum was designed to address various aspects of cancer research (prevention trials, treatment trials or biospecimen collection) and engage discussion and perspectives from the community. It was structured as a participatory workshop (Chambers, 2002), which is often used in CBPR. Each forum included community members who were recruited through our Steering committee, community partners (such as houses of worship and schools) and local media outreach. In addition, we provided a hot meal at each forum that was catered by a local business.

After a welcome and warm up exercise to create a sense of casualness and exchange, a short informal presentation was provided by a team including an FCCC investigator and community leader to provide some general information about the topic (e.g., what is a clinical trial?). We utilized an Audience Response System (ARS) to facilitate discussion and data collection. For example, one could initially pose a question such as: “Would you contribute your blood to a research project on cancer?” and immediately share the results with the group. After the initial presentation and buzzing clusters (Chambers, 2002), the question could be posed again. Subsequent discussion could focus on what made people change their minds or retain their initial opinions.

The structure of the SOURCE dialogue included a set of questions before and after the session. At the beginning of the session, each participant completed questions using the ARS system, including:

issues around trust in research and health care

knowledge about clinical research and biospecimens donation

attitudes toward participating in clinical research

attitudes toward donating biospecimens for research

facilitators to participate in clinical research and biospecimens donation

barriers to participate in clinical research and biospecimens donation

During the dialogues participants were broken up into small groups, and discussion questions were provided as a guide. We used a “buzzing cluster” method and situated participants in triads to create an opportunity for dialogue about the issues. Given the sensitive nature of the topic and desire to generate candid conversations, the small group discussions were not recorded; rather, a human recorder sat with each group to take notes on a flip chart that was then shared back to the larger group. These small group sessions focused on actual clinical trials (prevention and treatment) that have been conducted to provide “real-life” scenarios for discussion.

Immediately after the dialogues, each group had the opportunity to debrief with the larger group. During this time the participants were asked to answer a small series of debriefing questions using the Audience Response System.

These forums were held in a variety of community settings including a charter school, Baptist and Catholic Church, a local college, Veterans group, and an Islamic mosque. One of the outgrowths of the project was a professional development in-service for FCCC staff facilitated by one of the newly identified stakeholders, which provided an overview of the Islamic community in Philadelphia as well as culturally appropriate strategies for working with the Islamic community.

In total, 96 persons were included in the evaluation through seven community forums (three in English and four in Spanish). The average age of participants was 57 years, 14% reported that they had been diagnosed with cancer, 62% they would be willing to participate in research if they were certain that their identity could be protected. This last point stressed the importance of highlighting participant’s rights upfront in all efforts moving forward.

Through this level of community involvement, a great deal was learned about how to design messages to address motivators, barriers, and concerns of the community. As shown in Table 1, specific insights from African American and Hispanic participants about the research scenarios used in the forum discussions guided the specific messages that were included in our programs and materials moving forward.

Table 1. Participants’ Insights about Specific Research Scenarios and their Application to Future Messages and Approaches.


African American


How Used

Biospecimen (saliva)

concerns about cleanliness

willing to take part to help self and others

preferred if counseling group was similar to self (age, ethnicity)

concerns about mailing sample, preferred in-person drop-off

want results to be shared especially if problems were found

wanted more information about the study’s purpose and how the samples would be used

during a subsequent biospecimen study, in-person staff collected samples to avoid mailing; participants informed as to how the samples would be used and their rights to cease participation

participants also informed that the de-identified information would not allow for us to re-contact them if something (other than what we were looking for) was found

Cancer prevention study (longitudinal with blood sample)

wanted researchers to share progress/results throughout the study

concerns regarding the long commitment, people move

would like incentives to be provided

taking part helps future generations

involve family in decision-making

share results/stay in touch via reunions

during consenting process participants informed of process to stay in touch with study team, if and when incentives are provided to off-set costs.

participants encouraged to take information home and discuss with family and friends, ask questions prior to making a decision to join a study.

for non-therapeutic studies, contact maintained via e-mails and reunions when possible

Colorectal trial (surgery with or without chemotherapy)

use lay terms to explain the study, pamphlets, testimonials

stage of cancer would make a difference on whether to take part in study

patient should ask many questions (i.e., side effects, how is the care team)

did not like study “blinding”

explain if insurance is needed to take part

explain the study’s pros/cons in a respectful way and in Spanish

For priority studies, plain language synopsis being developed

developed plain language brochure to explain clinical trials and included questions that should be asked, including side effects, insurance, risks and benefits

designed English and Spanish brochures

testimonials developed and posted on FCCC website

The process of involving the Steering Committee, comprising community leaders and basic science researchers, in the development and implementation provided new insights for both parties. Also, involving community leaders in the facilitation of the sessions increased the number of attendees and enhanced the quality of the dialogue. Community leaders became advocates for the Cancer Center. Using actual study scenarios served as a catalyst for the group discussions and elicited a wide range of responses. A bonus outcome was that one of our community leaders provided a cultural in-service to FCCC staff on how to work effectively with the Muslim community.

Phase III: Developing Personal Stories from the Community- Digital Storytelling

The second project was a digital storytelling research (DST) project designed for African American patients, survivors, caregivers and family members to document and share stories about their experience with cancer and cancer research through photographs they’ve taken and group activities (Quaid et al., 2010, Kim et al., 2011, Larkey et al., 2009). It was designed to address the issue of low minority participation in cancer research. Digital storytelling, or the use of computer-based tools to tell a story, was chosen as a method to engage community members in CBPR and as a creative and therapeutic approach to gather information about participants’ experience with cancer and cancer research.

This project was adapted from the “From Snapshot to Civic Action” project (Powers, Freedman, & Pitner, 2012) developed and implemented by researchers at the University of South Carolina College of Social Work and African American community members in Columbia, South Carolina. In “From Snapshot to Civic Action,” participants explored their community’s strengths and concerns to generate potential solutions. The project was selected as a template for Phase III of FCCC’s project because it used a CBPR approach and photovoice, a type of digital storytelling that combines digital photography and facilitated dialogue to gain community perspective (Wang & Burris, 1997; Wang et al., 1998).

Working through this newly established social network of community partners in the Neighbors Initiative region, 10 individuals were recruited to participate in the study. Each participant in the project was given a camera to document their story and had the option to choose what medium they would use to give voice to their story and images. Text messages and photos from a camera phone were turned into a print book. An audio story that was produced for a project at a local PBS station was developed into a video. The elder of the group and two-time cancer survivor used photography dating back to her childhood to develop a collage storyboard to tell her story.

The digital storytelling workshop included a series of three two-hour, face-to-face group sessions, several one-on-one sessions, and a final “celebration” reception session. The group sessions were designed for patients, survivors, caregivers, and family members to document and share stories about their experience with cancer and cancer research through photographs they took and group activities. Participants were guided through the digital storytelling process via a series of exercises to elicit their fears, hopes and experiences with cancer as well as with community-based participatory research, and clinical trials/biospecimen research. As shown in Table 2, each participant worked to create their own personalized digital story and could use a medium that most suited them (i.e., slideshow, video narrative, digital storyboard). They worked on their individual projects between sessions to exhibit to group members and invited friends and family at the final celebration reception. The sessions were held at the local Internet Café, which was reserved for the sessions and equipped with computers and other software/equipment needed for participants to complete their digital storytelling projects. The participants, about half of whom will have participated or were currently enrolled in cancer research, shared their digital stories with one another during the sessions and with friends and family during the final “celebration” reception which took place in a Neighbors community church.

Table 2. Participant Background and Description of Digital Stories.


Type of cancer or caregiver/support

Medium used

Story focus

Staff observations

AA Female

BC survivor


Role of Storytelling in AA community

audio developed at local PBS station. Video produced for DST

AA Female

CRC survivor


Documented stages of chemo

used text messages and photos to create book

AA Female

Brain cancer survivor

Music video

How cancer impacted her family 2X

the toll cancer has taken on her family and marriage

AA Female


Photo collage storyboard

Used the chronology of her life and words

started out as a written speech and evolved into a storyboard

AA Female



Talked about her journey and the support

Initially, it was difficult for her to find her voice and tell her story. Through the process she found strength and her voice.

AA Female



Misdiagnosis and survivorship

Was diagnosed while she was planning her wedding—she possesses an inner strength.

AA Female


Music video

Third generation cancer survivor

Told her story from perspective of her grandmother, mom, and self.

AA Female


YouTube video


Produced by staff at WHYY (Philadelphia Public Radio)

An outcome that was not anticipated but welcomed was the close group dynamic. Each week participants shared their stories and feelings and intuitively supported or celebrated each other’s milestones. Following the project, the group refused to disband, stating they wanted to continue meeting and wanted to find a way to share information to others about cancer and the importance of considering research participation. Staff maintained communications with the group via e-mails, meeting periodically with individuals and at times helping them with challenges in their lives, including helping them navigate through issues related to treatment and recurrence, as well as supporting a community fundraiser. This level of friendship and support from the outreach staff is the foundation of the lasting relationships with the community. Taking the groups’ interest to heart, another project came about—to develop community ambassadors who would share information regarding the importance of considering research participation.

Phase IV: Capacity Building- Developing Capacity of the Community

In 2015–2016, the Community Outreach Program developed and initiated the Community Ambassador Training as a direct offshoot of our prior community-based projects. Participants from both projects expressed a desire to remain involved and continue sharing information with the community. The mechanism we selected was a capacity-building curricula originally designed for health professionals. Our adaptation was modified for lay audiences, included information from past research projects, and incorporated multimedia to reinforce the content. Working with our colleagues at Temple University’s Community Health Worker program and through our social network of community members and partner sites, we recruited 24 individuals to participate in the training. Findings from the study will enable us to further tailor the curricula to meet the needs of the ambassadors and the community. Explaining the purpose of the training and the desire to expand our reach by testing a new model has kept the participants engaged. Once the training is completed, there will be a cohort of lay community ambassadors to assist efforts to increase the community’s awareness of and knowledge about medical research and express why it is important to the African American community, share resources about services, and eventually to assist with promotion of available studies. Participants who completed the training received a small incentive for participating in the study. Following completion of the first cohort training, several participants provided heartfelt notes of appreciation for our time and efforts but also for our belief in them and empowering them.


The Fox Chase Cancer Center’s Neighbors Initiative was built on authentic relationships with community members and was guided by CBPR principles to ensure the health communications programs and approaches were culturally relevant and addressed the strengths and needs of the community. As shown in Table 3, these principles were applied across the lifespan of the initiative.

Table 3: Application of CBPR Principles to the Neighbors Initiative

CBPR Principle

Application in the Neighbors Initiative

1. Recognizing the community as a unit of identity

Identified zip codes and communities and conducted informal and formal community assessment

2. Building on strengths and resources within the community

Informal and formal community assessment highlight key organizations (e.g., religious), community advocates and businesses for partnership development

3. Facilitating collaborative partnerships in all phases of the research

Established a Community Advisory Board (CAB) consisting of a broad range of stakeholders within the community

4. Integrating knowledge and action for mutual benefit of all partners

Conducted community education to increase community’s knowledge, community-based cancer screening and storytelling workshop

5. Promoting a co-learning and empowering process that addresses social inequalities

Conducted community dialogues with the community and cancer researchers and visits to the biospecimen labs at the cancer center

6. Involving a cyclical and iterative process

CAB was actively involved throughout the entire initiative and provided insights that guided the development of new initiatives and projects

7. Addressing health from both positive and ecological perspectives

Focus is on cancer prevention, detection, treatment, and survivorship and addressing these issues at the individual and organizational level

8. Disseminating findings and knowledge gained to all partners

Shared results of various initiatives through the CAB and other community groups

Researchers and staff learned a great deal about the real issues faced by the community and about the different cultural norms and meanings. It was important to fully discuss these difficult issues related to research participation. For example, using the Henrietta Lacks story that highlights the abuse of research in the 1950s stirred some deeply felt issues of mistrust and exploitation that required uncomfortable discussions for research and institutional staff. Being prepared to navigate discussions regarding social justice, and helping participants gain a better understanding of measures in place to avoid such injustices as those experienced by Mrs. Lacks and her family, is critical. It is important to acknowledge past abuses but imperative to increase the community knowledge about patient protection measures and questions they should be asking if or when approached about participating in research. Finally, showing the many contributions that Mrs. Lacks’s cells (HeLa cells) have made to science was a great source of pride to the participants in these studies and a turning point in these discussions. Participants remain engaged, with a deepened understanding of the importance of research participation, a confidence that they can ask questions, and a desire to share with others within their community.

Our Neighbors Initiative, including the specific projects described here, provided important insights and lessons learned that are applicable to other efforts to use CBPR approaches to more deeply understand and involve communities in the development and delivery of health communication programs. Table 4 highlights some of the key lessons learned from the Neighbors Initiative.

Table 4. Lessons Learned.

Lessons learned about building authentic relations and partnerships


Being present in the community

Community events, health fairs, and attending community stakeholder events

Supporting the community

Using community space and paying for it, hosting events at local community restaurants, using local caterers. Providing educational resources and giveaways.

Faith-based partnerships

Working with diverse houses of worship (Baptist, Roman Catholic, and Islamic); working with an all-male veterans group in a faith-based setting.

Trust, transparency

Using the “Immortal Life of Henrietta Lacks” to share patient protection measures now in place; providing tours of our facility (Biorepository Labs) to view HeLa cells and to have opportunity to ask questions and learn about the informed consent process and how cells are processed and stored and how patient information is protected.

Organizational capacity building

Allowing the community to contribute to the organization’s knowledge re: preferences and initial concerns; participants contributing to the study design and recruitment approaches and materials.

Using what we have learned in each project as a building block for the next projects; faculty/researchers invited into the community to dialogue with community members.

Involving community beyond research

Two participants/key informants invited to join our Community Advisory Council; these members are financially compensated for their time. Invited a community stakeholder to deliver a cultural competence in-service to support professional development, and networked participants to other efforts focused on increasing the community’s understanding of the importance of considering research participations via testimonials.

Links to Digital Materials

Cancer 101 (2008, March). Adaptation guidelines.

Further Reading


  • Baquet, C. R., Henderson, K., Commiskey, P., & Morrow, J. N. (2008). Clinical trials: The art of enrollment. Seminars in Oncology Nursing, 24(4), 262–269.
  • Chambers, R. (Ed.). (2002). Participatory workshops: A sourcebook of 21 sets of ideas & activities. London: Earthscan.
  • Colon-Otero, G., Smallridge, R. C., Solberg, L. A. Jr, Keith, T. D., Woodward, T. A., Willis, F. B., & Dunn, A. N. (2008). Disparities in participation in cancer clinical trials in the United States: A symptom of a healthcare system in crisis. Cancer, 112(3), 447–454.
  • Comis, R., & Crowley, J. (2006). Baseline study of patient accrual onto publicly sponsored U.S. cancer clinical trials: An analysis conducted for the global access project of the national patient advocate foundation. Philadelphia, PA: Coalition of Cancer Cooperative Groups.
  • Evelyn, B., Toigo, T., Banks, D., Pohl, D., Gray, K., Robins, B., & Ernat, J. (2001). Participation of racial/ethnic groups in clinical trials and race-related labeling: A review of new molecular entities approved 1995–1999. Journal of the National Medical Association, 93(12 Suppl.), 18S–24S.
  • Gadegbeku, C. A., Stillman, P. K., Huffman, M. D., Jackson, J. S., Kusek, J. W., & Jamerson, K. A. (2008). Factors associated with enrollment of African Americans into a clinical trial: Results from the African American study of kidney disease and hypertension. Contemporary Clinical Trials, 29(6), 837–842.
  • Israel, B. A., Schulz, A. J., Parker, E. A., & Becker, A. B. (1998). Review of community-based research: Assessing partnership approaches to improve public health. Annual Review of Public Health, 19, 173–202.
  • Katz, M. L., Keller, B., Tatum, C. M., Fickle, D. K., Midkiff, C., Carver, S., Krieger, J. L., Slater, M. D., & Paskett, E. D. (2015). Community members’ input into cancer prevention campaign development and experience being featured in the campaign. Progress in Community Health Partnerships, 9(2), 149–156.
  • Katz, R. V., Wang, M. Q., Green, B. L., Kressin, N. R., Claudio, C., Russell, S. L., & Sommervil, C. (2008). Participation in biomedical research studies and cancer screenings: Perceptions of risks to minorities compared with whites. Cancer Control, 15(4), 344–351.
  • Kim, Y. C., Moran, M. B., Wilkin, H. A., & Ball-Rokeach, S. J. (2011). Integrated connection to neighborhood storytelling network, education, and chronic disease knowledge among African Americans and Latinos in Los Angeles. Journal of Health Communication, 16(4), 393–415.
  • Larkey, L. K., Lopez, A. M., Minnal, A., & Gonzalez J. (2009). Storytelling for promoting colorectal cancer screening among underserved Latina women: a randomized pilot study. Cancer Control, 16(1), 79–87.
  • Lumpkins, C. Y., Greiner, K. A., Daley, C., Mabachi, N. M., & Neuhaus, K. (2013). Promoting healthy behavior from the pulpit: Clergy share their perspectives on effective health communication in the African American church. Journal of Religion and Health, 52(4), 1093–1107.
  • Michaels, M., & Seifer, S. Education Network to Advance Cancer Clinical Trials (ENACCT) and Community-Campus Partnerships for Health (CCPH). (2008). Communities as Partners in Cancer Clinical Trials: Changing Research, Practice and Policy. Silver Spring, MD.
  • Mills, E. J., Seely, D., Rachlis, B., Griffith, L., Wu, P., Wilson, K., Ellis, P., & Wright, J. R. (2006). Barriers to participation in clinical trials of cancer: A meta-analysis and systematic review of patient-reported factors. The Lancet Oncology, 7(2), 141–148.
  • Powers, M., Freedman, D., & Pitner, R. (2012). From snapshot to civic action: A photovoice facilitator’s manual. University of South Carolina, College of Social Work. Retrieved from
  • Quaid, D., Thao, J., & Denham, C. R. (2010). Story power: the secret weapon. Journal of Patient Safe, 6(1), 5–14.
  • Shavers, V. L., Lynch, C. F., & Burmeister, L. F. (2001). Factors that influence African-Americans’ willingness to participate in medical research studies. Cancer, 91(1 Suppl.), 233–236.
  • Shirazi, M., Engelman, K. K., Mbah, O., Shirazi, A., Robbins, I., Bowie, J., Popal, R., Wahwasuck, A., Whalen-White, D., Greiner, A., Dobs, A., & Bloom, J. (2015). Targeting and tailoring health communications in breast screening Interventions. Progress in Community Health Partnerships. Research, Education and Action, 9, 83–89.
  • Skloot, R. (2009). The immortal life of Henrietta Lacks. New York: Broadway Books.
  • Stewart, J. H., Bertoni, A. G., Staten, J. L., Levine, E. A., & Gross, C. P. (2007). Participation in surgical oncology clinical trials: Gender-, race/ethnicity-, and age-based disparities. Annals of Surgical Oncology, 14(12), 3328–3334.
  • Todd, A. M., Laird, B. J., Boyle, D., Boyd, A. C., Colvin, L. A., & Fallon, M. T. (2009). A systematic review examining the literature on attitudes of patients with advance cancer toward research. Journal of Pain and Symptom Management, 37(6), 1078–1085.
  • Treiman, K., McCormack, L., Olmsted, M., Roach, N., Reeve, B. B., Martens, C. E., Moultrie, R. R., & Sanoff, H. (2017). Engaging patient advocates and other stakeholders to design measures of patient-centered communication in cancer care. The Patient—Patient-centered Outcomes Research, 10(1), 93–103.
  • Wang, C., & Burris, M. A. (1997). Photovoice: Concept methodology, and use for participatory needs assessment. Health Education & Behavior, 24(3), 369–387.
  • Wang, C. C., Yi, W. K., Tao, Z. W., & Carovano, K. (1998). Photovoice as a participatory health promotion strategy. Health Promotion International, 13(1), 75–86.
  • Weinberg, A. D. (2008). The EDICT Project: Policy Recommendations to Eliminate Disparities in Clinical Trials. Retrieved from