Partnering with Sexual and Gender Minority Communities to Address Cancer Disparities in Detroit. Funding Source: Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award (6252-WSU) Project Lead: Hayley S. Thompson Ph.D. 1 OVERVIEW This report presents the work resulting from the project titled, “Partnering with Sexual and Gender Minority Communities to Address Cancer Disparities in Detroit.,” funded by a PCORI Eugene Washington PCORI Engagement Award (6252-WSU). The project supported the founding of Detroit HealthLink for Equity in Cancer Care. The HealthLink model was first applied in the Queens Library system (Queens Library HealthLink) in New York City as part of an R01 research study funded by the National Cancer Institute (PI: Bruce Rapkin, Ph.D.; R01CA119991) that was designed to test the efficacy of a comprehensive participatory research approach to reduce cancer disparities. The community partner for this project was LGBT-Detroit. Founded in 1994, LGBT-Detroit is an African American-led grassroots organization located in the city of Detroit. One of the signature programs of LGBT-Detroit is “Hotter Than July”, an annual African American pride celebration that includes a week-long series of activities and is attended by nearly 20,000 people. LGBT-Detroit serves approximately 1000 people annually through other programming. PCORI Project Aims Aim 1: To increase capacity among sexual and gender minority (SGM) community stakeholders in metro Detroit – i.e., cancer survivors, caregivers, advocates, and service providers, - to develop and pursue and cancer-specific PCOR agenda. Aim 2: To describe cancer care-related experiences, concerns, and needs among diverse SGM adults. Aim 3: To identify cancer-related PCOR priorities in SGM communities. Aim 4: To disseminate the SGM PCOR priorities to cancer researchers. PCORI Project Objectives Objective 1: Establish at least two SGM Cancer Action Councils with community stakeholder members. Objective 2: Train 20 members using an existing curriculum to increase their capacity to serve as PCOR partners, with an emphasis on focus group methods. Objective 3: Identify cancer-specific PCOR needs among racially and socioeconomically diverse SGM adults through focus groups. Objective 4: Develop a report of cancer-specific research priorities generated by the SGM Cancer Action Councils and informed by the data collected. Objective 5: Create a network of cancer researchers interested in SGM PCOR to whom these research priorities will be disseminated. Project Staff Hayley S. Thompson, Ph.D., Project Lead: Dr. Thompson is currently a tenured Professor at Wayne State University (WSU) School of Medicine, Department of Oncology. She is also Karmanos Cancer Institute’s (KCI) Associate Center Director for Community Outreach and Engagement and Faculty Director of the Office of 2 Cancer Health Equity & Community Engagement (OCHECE). Dr. Thompson supervised all aspects of the study, along with Co-Lead Deirdre Shires. Deirdre Shires, PhD, MPH, MSW, Project Co-Lead: Dr. Shires is an Assistant Professor in the School of Social Work at Michigan State University. She has master’s degrees in both social work and public health and has spent many years working to improve health care quality and access for the lesbian, gay, bisexual, and transgender (LGBT) community. She served as the health services coordinator at Affirmations Gay and Lesbian Community Center, planning health programs for the lesbian, gay, bisexual, and transgender community in the metropolitan Detroit area. She then spent nearly a decade working as a research project manager in the Center for Health Policy and Health Services Research at Henry Ford Health System, where she managed large- scale NIH and CDC-funded cancer screening survey and evaluation studies. Dr. Shires has previously published articles on healthcare utilization, cancer screening, healthcare discrimination among transgender individuals, and health disparities. She currently serves on the Sexual Orientation and Gender Identity Health Equity Council of Southeast Michigan. Curtis Lipscomb, Community Co-Lead: Mr. Lipscomb founded LGBT Detroit in 2003 and has since served as the non-profit's Executive Director. LGBT Detroit aims to increase awareness of and support to Detroit's vibrant LGBT culture through education and advocacy. The organization hosts an annual pride celebration attended by nearly 20,000 people. Knoll Larkin, M.P.H., Project Coordinator & HealthLink Specialist: Mr. Larkin is currently Director of the KCI’s OCHECE. As Project Coordinator, Mr. Larkin supervised the day-to-day activities of the project; participated in the adaptation of the BYC curriculum; supervised the recruitment of appropriate candidates for CAC membership; served as a facilitator of CAC meetings; served as the primary instructor of the BYC curriculum; and provided oversight of evaluation data collection and management LGBT-Detroit HealthLink Specialist: This role was originally filled by Danny Inman, who served as a Program Coordinator at LGBT Detroit. In November 2018, Mr. Inman accepted a position at another organization. This role was later filled by Truman Hudson, Jr, Ed.D. OBJECTIVE 1: ESTABLISH CANCER ACTION COUNCILS Creation of the LGBT-Detroit Cancer Action Councils (CACs) In acknowledgement of the tremendous diversity among SGMs, we originally proposed two CACs. Based on early input from LGBT-Detroit leadership and other stakeholders, it was decided that the groups serve different age groups due to generational differences in “coming out” and disclosure of sexual orientation/gender identity as well as social media use. Initially, we established a younger group (younger than 45 years) and older group (45 years and older). In order to recruit members, we solicited nominations through LGBT-Detroit, SAGE Metro Detroit (Services & Advocacy for Gay, Lesbian, Bisexual, and Transgender Elders) and encouraged self-nominations through advertisements. Interested individuals submitted a paper application or applied online and then met in person with a study team members who explained expectations of CAC members and determined the individual’s fit with the project’s mission. Individuals were formally invited to become CAC members based on their expressed interest in advancing cancer research, demonstration of prior community participation or activism, their understanding of the role of CAC member, and willingness/ability to attend CAC meetings over the course of 18 months. 3 The CACs began meeting in November 2017. Table 1. LGBT-Detroit CAC Members. However, due to inconsistent attendance in the younger Name Affiliation CAC, the project team decided to merge the two groups in December 2018. Table 1 includes all 11 CAC members Jonathan Anderson Caregiver (Age range: 28 – 70 years old; 36% African American; Rhiannon Chester* Survivor/Caregiver 36% identified as female and lesbian, the remainder as Audry Crump Survivor male and gay). CAC meetings as part of the PCORI project ended August 2019. However, the CAC has committed Torri Hamilton Survivor/ Caregiver to continuing their work together as a group and Marcia Hauptman Survivor meeting at LGBT-Detroit with support from KCI and Judith Lewis Survivor OCHECE. Martin McDonald Survivor Megan Mulvaney Caregiver Doug Risner Survivor JoMeca Thomas* Advocate Nathan Strickland** Survivor *Did not complete full project period; **Deceased. OBJECTIVE 2: TRAIN CAC MEMBERS USING THE ADAPTED BYC CURRICULUM Training was led primarily by Mr. Larkin, with support from other HealthLink team members, along with supplemental faculty and community leader speakers, presented in Table 2. Table 4 also includes CAC members’ evaluations of module content and presentation. Following each module, CAC members were asked to complete 6 items rating specific dimensions of the quality of content and presentation. These included 1) How interesting was the presentation? 2) How easy was it to understand the language used in the presentation? 3) How clear was the speaker in presenting the information? 4) How much opportunity was there to ask questions and make comments? 5) How relevant was the information to the cancer-related challenges your community faces? 6) How much did the presentation increase your understanding of the topic? Response options were as follows: 1=none/not at all, 2= a little bit, 3= a fair amount, 4=a lot/very. Members were also presented with an additional item asking for an overall rating (1=poor, 2=fair, 3=good; 4=very good; 5=excellent). Responses are presented in Table 4. Open-ended questions were also asked (What was the most important thing you learned from this presentation? How do you plan to use what you learned today in the future? Is there anything that could have made this presentation better?). 4 Table 2. Module Title Module evaluation Overall evaluation: Very Mean rating good/excellent (Possible range=1-4) (%) 1 Introduction to Research and Evaluation 3.85 94.3 2 Community Engagement in Research 3.86 94.3 3 Developing Research Questions 3.81 100.0 4 Literature Search 3.50 88.9 5 Research Design 3.70 100.0 6 Research Ethics and IRBs 3.89 89.5 7 Qualitative/Quantitative Research Methods 3.78 100.0 8 Grant Writing 3.89 100.0 9 Public Policy & Advocacy 3.94 100.0 OBJECTIVE 3: IDENTIFY CANCER-SPECIFIC PCOR NEEDS AMONG SGM ADULTS THORUGH FOCUS GROUPS There was a total of 33 individuals we were interested and eligible for the focus groups, with a plan of five focus group: white gay/bisexual men, white gay/bisexual women, AfAm gay/bisexual men, AfAm gay/bisexual women, and trans-men and transwomen of either race. However, due to the low attendance described in detail below, we adjusted our strategy and attempted to combine same-race groups across gender. We successfully completed two focus groups. • Group 1: This was our first focus group, planned for white gay/bisexual men. Of the 9 individuals scheduled to attend, 4 attended (3 male, 1 female). The female participant mistakenly attended on the wrong evening but traveled a long distance and was included in the group. • Group 2: Due to the high number of men who missed the initial group, we scheduled a second group with white gay/bisexual men.