Engaging community members in cancer research: an assessment of an NCI-designated cancer center

Abstract

Purpose

Despite the importance of engaging community members in research, multiple barriers exist. We conducted a mixed-methods evaluation to understand the opportunities and challenges of engaging community members in basic, clinical, translational, and population science research.

Methods

We designed a survey and an interview guide based on the constructs of the Consolidated Framework for Implementation Research. Surveys were distributed electronically to all cancer center investigators and interviews were conducted virtually with a select group of basic, clinical, and population science investigators. Survey data (n = 77) were analyzed across all respondents using frequency counts and mean scores; bivariate analyses examined differences in responses by research program affiliation, gender, race, and faculty rank. Interviews (n = 16) were audio recorded, transcribed verbatim, and analyzed using a reflective thematic approach.

Results

There was strong agreement among investigators that “Community engagement in research will help the SKCC address cancer disparities in the catchment area” (M 4.2, SD 0.9) and less agreement with items such as “I know how to find and connect with community members who I can engage in my research” (M 2.5, SD 1.3). Investigators mentioned challenges in communicating complex science to a lay audience but were open to training and workshops to acquire skills needed to integrate community members into their research.

Conclusion

Cancer centers should develop and promote training and collaborative opportunities for investigators and community members. Overcoming challenges will lead to more patient- and community-centered cancer research in the future.

Appendices

Appendix 1

For each question below, circle the response that best categorizes how you feel about the statement, where: 1 = Strongly Disagree, 2 = Disagree, 3 = Neither Agree nor Disagree, 4 = Agree, and 5 = Strongly Agree.

I. Intervention characteristics	Strongly disagree	Disagree	Neither agree nor disagree	Agree	Strongly agree
A. I am aware of the scientific evidence for including community members in research	1	2	3	4	5
B. Community outreach and engagement is relevant to my area of research	1	2	3	4	5
C. My research can impact cancer disparities in the SKCC catchment area	1	2	3	4	5
D. It would be challenging for me to integrate community members into my research	1	2	3	4	5
E. I have the ability to run a pilot COE study and make appropriate changes before implementing a larger scale project	1	2	3	4	5
F. I understand the time it would require to integrate community members into my research	1	2	3	4	5
G. I understand the cost/resources it would require to integrate community members into my research	1	2	3	4	5

II. Outer setting	Strongly disagree	Disagree	Neither agree nor disagree	Agree	Strongly agree
A. I am aware of the needs of community members in the SKCC catchment area	1	2	3	4	5
B. The lived-experience and insight of community members can positively impact my research	1	2	3	4	5
C. Community members don’t understand the value of being involved in research	1	2	3	4	5
D. Community members have the skills and abilities needed to be involved in my research	1	2	3	4	5
E. Community members have a valid reason to not trust researchers or the research process	1	2	3	4	5

III. Inner setting	Strongly disagree	Disagree	Neither agree nor disagree	Agree	Strongly agree
A. The SKCC provides adequate resources to support me in engaging community members in my research	1	2	3	4	5
B. The SKCC promotes and celebrates community outreach and engagement in research	1	2	3	4	5
C. Integrating community outreach and engagement in research is a priority for SKCC leadership	1	2	3	4	5
D. The agencies that fund my research would reward community outreach and engagement in research	1	2	3	4	5
E. Community engagement in research will help the SKCC address cancer disparities in the catchment area	1	2	3	4	5

IV. Characteristics of individuals	Strongly disagree	Disagree	Neither agree nor disagree	Agree	Strongly agree
A. Community-engaged research aligns with my personal values and goals	1	2	3	4	5
B. Community-engaged research aligns with my professional goals and objectives	1	2	3	4	5
C. I am motivated to align my research to meet the needs of the catchment area	1	2	3	4	5
D. I am confident in including community members into my research	1	2	3	4	5
E. I have the knowledge to include community members in my research	1	2	3	4	5
F. I see the value in including community members in my research	1	2	3	4	5

V. Process	Strongly disagree	Disagree	Neither agree nor disagree	Agree	Strongly agree
A. I am aware of key individuals involved with community outreach at the SKCC	1	2	3	4	5
B. I am aware that the SKCC has a Community Advisory Board	1	2	3	4	5
C. I know how to find and connect with community members who I can engage in my research	1	2	3	4	5
D. I can overcome barriers that would make it difficult to engage community members in my research	1	2	3	4	5
E. I can translate my research to lay members of the local community	1	2	3	4	5
F. I am comfortable working in community settings and with community members	1	2	3	4	5

• What counties are in the SKCC catchment area? Choose all that apply.

  • Lehigh

  • Montgomery

  • Trenton

  • Delaware

  • Philadelphia

  • Gloucester

  • Camden

  • Burlington

  • Bucks

• Program affiliation

  • Translational Cellular Oncology (TaCO)

  • Cancer Risk and Control (CRC)

  • Molecular Oncology Regulation Approaches (MORA)

  • Immune Cell Regulation and Targeting (IRT)

• Terminal degree

  • MD

  • MD/PhD

  • PhD

  • Other

• Current faculty rank

  • Trainee/post doc

  • Assistant professor

  • Associate professor

  • Professor

  • Other

• Race

  • White

  • Black or African American

  • American Indian or Alaska Native

  • Asian

  • Native Hawaiian or Pacific Islander

  • Other

• Are you of Hispanic/Latino origin?

  • Yes

  • No

• Gender

  • Male

  • Female

  • Trans

  • Prefer not to answer

  • Other

• Age

  • 18–34

  • 35–49

  • 50–64

  • 65–74

  • 75 or older

• What county do you currently reside?

  • Bucks county

  • Camden county

  • Delaware county

  • Montgomery county

  • Philadelphia county

  • Other/Unknown

• Do you have experience working with the community? Check all that apply.

  • Yes—professionally

  • Yes—personally

  • No—I do not have experience working with the community.

• If you selected yes to the question above, briefly describe your experience here.

Appendix 2

Interview guide

Program leader questions

Can you tell us about yourself and your personal research?

What are the goals of this SKCC research program? How does COE fit into the goals of this program?

Does the overall SKCC culture support the integration of COE into this program?

Where do you see opportunities for integrating COE into this program? What would that look like? What challenges do you anticipate?

What resources would you need to overcome those barriers?

Do you think investigators in this program have the interest to translate their research to the community successfully or include community members in their research?

Do you have any other thoughts about COE and your program?

Investigator questions

Can you tell us about your research focus?

If you had to describe that to a community member, what would you say?

What do you think community involvement would look like in your research?

What skills and abilities would community members need to be involved in your research?

What skills and abilities would you need to involve community members in your research?

Are there any other barriers that could prevent you from including community members? What are the resources you would need to accomplish this?

If you were to invite a community member to your lab meeting, how would that go? Would it change the dynamic of your team of focus of your research?

If you were to reach out to connect with the community, who would you reach out to? How would you do that? Would you need any resources to connect with the community?

Is there anything else you want to share about COE as it relates to your research?