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.

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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

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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.

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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?).

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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. Of the 6 scheduled to attend, 4 attended. We had additional focus groups scheduled.

• White gay/bisexual women: 4 scheduled, 1 attended • AfAm gay/bisexual men and women: 7 scheduled, 1 attended • Transgender men and women: 4 scheduled, 0 attended

Of the 20 who didn’t attend across all groups, we were able to follow up with 16. Of these 16, 11 (69%) reported poor health related to their cancer or other comorbidities and 5 cited problems with transportation to the focus groups, even though we offered transportation assistance to all participants.

In light of the health challenges faced by these survivors, we amended our protocol to include key informant interviews to make it easier for these individuals to participate. There was strong interest in individual interviews. Of the 20 who didn’t attend, 15 (75%) committed to completing an interview (60% 5 female, 20% transgender; 67% African American) and are waiting to be scheduled upon IRB approval of the amendment, which has taken much longer than usual due to atypical delays in review by IRB staff. Once approval is received, these interviews will be completed.

While most of the participants had few perceived barriers to receiving cancer care, many did not have a primary care provider at the time of diagnosis. Roughly half of the participants actively came out to their oncology provider(s) as LGBT while others chose not to talk about it or let the care providers make their own assumptions. There seemed to be a noticeable difference in how participants viewed their identity the clinical interaction. Younger participants (< 50 years) talked about their LGBT identity as a very important part of their care and perceived this information as highly relevant for their providers to know. Younger participants also talked more frequently about seeking out LGBT-identified or LGBT-knowledgeable providers, stating an atmosphere where they could be authentic was very important to getting good care. Older participants (>50 years) weren’t always sure that their sexual orientation was important in their cancer care; they wanted to be treated “just like everyone else”. For these individuals, providers with good bedside manner were more important than knowledge of the LGBT community.

While none of the participants thus far identified as transgender or gender non-binary, it was discussed multiple times that members of the transgender community would have the most challenging time accessing quality cancer care and coming out to their oncology providers. When participants were asked where along the cancer continuum of care exists the largest area of need for intervention for LGBT communities, a surprising majority replied with end-of-life care. End-of-life care was especially important as participants observed that many LGBT people are not close to their biological families, may be socially isolated, and care providers in hospice or nursing homes may not be well trained to work with transgender individuals or people with a same sex partner.

OBJECTIVE 4: REPORT OF CAC RESEARCH PRIORITIES

The CAC participated in a process of evidence prioritization in which they identified and prioritized research topics. This process began with the identification of critical needs along the cancer care continuum that they observed in their communities and was consistent with the steps in the Tufts CTSI Engaging Stakeholders in Comparative Effectiveness Research program, specifically, the identification of the mission, vision, and objectives for research. This step was followed by the identification and prioritization of research topics and the identification and prioritization of research questions. A key strategy that we applied as part of this process was concept mapping. Steps in concept mapping included the following: (1) starting with a main topic or idea in the center of the map; (2) adding an idea that connects to the main topic; (3) taking these ideas to branch off even more; (4) using one branch of inquiry on the map to help form a question. CAC members worked in small groups to collaboratively generate concept maps. The LGBT-Detroit CAC identified 12 research domains: 1) cancer and comorbidities, 2) cancer caregiving, 3) Psychological well-being of cancer patients, 4) patient-provider communication and clinical interactions, 5) cancer survivorship, 6) provider-to-provider communication and coordination of care, 7) cancer screening and prevention, 8) financial burden of cancer care, 9) SGM data disparities, 10) physical effects of cancer and cancer treatment, 11) patient and community cancer education and awareness, 12) patient navigation. The following six research domains were identified as the leading priorities for this group and 33 specific research questions were developed relevant to these domains.

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1. Cancer and comorbidities: The CAC emphasized the importance of research investigating the intersection of cancer and HIV and AIDS, in addition to other comorbidities. Research questions (4):

• What factors contribute to HIV exclusions in cancer clinical trials? Are these discriminatory or is there a valid medical basis? • Why is cancer risk higher in people living with HIV/AIDS? • What are the cancer care experiences of people living with HIV? • Do people living with HIV experience different issues around quality of life during treatment?

2. Cancer caregiving: The group raised a number of issues related to cancer caregiving, including lack of biologically related caregivers for SGM cancer patients and unique sources of caregiver burden among SGMs.

Research questions (8): • What are the patient caregiving needs for LGBTQ cancer patients/survivors? • What factors contribute to a lack of caregivers in LGBTQ community? • How do the changing dynamics in a relationship (patient/caregiver) affect that relationship? • How does legal recognition of relationship (e.g. marriage equality or lack thereof) impact the patient/caregiver relationship? • What are the unique supportive needs for LGBTQ caregivers? • How does lack of disclosure of relationship impact caregiver stress? • What impact does repeatedly coming out in healthcare settings have on the patient and on the caregiver? • How would a caregiver or caregiving support or education program be tailored for LGBTQ caregivers?

3. Psychological well-being among SGM cancer patients: The CAC raised a number of areas for future investigation, including discrimination or anticipated discrimination, coming out, social isolation, and stigma/shame.

Research Questions (11): • How does the fear of discrimination impact LGBTQ people getting cancer screenings on schedule? • How can healthcare professionals be better trained to come out as allies? • How do community members recognize allies in healthcare settings (i.e. how do people know it is safe to come out)? • What oncologist behaviors or practices help LGBTQ people feel more comfortable? What do people need in healthcare settings to feel comfortable coming out? • What oncologist behaviors contribute to patient fear, concerns about discrimination, etc.? • What are the impacts of LGBTQ-specific advocacy (patient & provider) on patient care? • What are people most fearful of when seeking care in terms of discrimination? What are they actually afraid will happen? • What is the impact of marginalization and discrimination on treatment outcomes? • How does discrimination or fear of discrimination impact patient decision-making? • How does eliminating barriers to LGBTQ access, retention, and completion of cancer prevention and care impact patient care?

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• How does altering the health care environment (e.g., adding SO/GI questions to intake forms and EHR, provide gender neutral bathrooms) affect the experience of care?

4. Patient-provider communication and clinical interactions: The CAC emphasized medical mistrust among SGMs, lack of LGBTQ cultural competence, and limited LGBTQ protections in healthcare settings.

Research Questions (4): • Do healthcare system non-discrimination policies reduce medical mistrust for LGBTQ patients? • How do legal protections for LGBTQ patients improve/encourage disclosure of SO/GI? • What is the best LGBTQ cultural competency training for oncology providers? • What are the long term, positive impacts on patient outcomes that come from improving office environment for LGBTQ patients?

5. Cancer survivorship: The group discussed research that addressed living with cancer, cancer recurrence, and the social construction of “survivorship.”

Research Questions (2) • Do LGBTQ cancer survivors have different supportive care needs than non-LGBTQ survivors? • How do challenges with finding/keeping a primary care provider impact LGBTQ survivor health outcomes? 6. Cancer screening and prevention. This area was also viewed as important, with a focus on tobacco and alcohol use.

Research Questions (4): • What is tobacco use like in LGBTQ communities? How is it characteristically different than in non- LGBTQ communities (e.g., time of initiation, types, patterns of use, etc.)? • What are alcohol and drug use like in LGBTQ communities (need for strong descriptive data)? (want • Are tailored screening and prevention interventions more likely to be successful in the LGBTQ community? • What are the barriers to screening in different portions of the community (e.g. Transgender men/women; gay men, etc.)?

OBJECTIVE 5: CREATE A NETWORK OF RESEARCHERS INTERESTED IN CANCER - SPECIFIC SGM PCOR

Community-Engaged Research Symposium We originally proposed to host a regional invitation to a half-day symposium that will focus on the work of the SGM Councils. However, after the project commenced, we hosted the inaugural Wayne State University & Karmanos Cancer Institute 2018 Community-Engaged Research (CEnR) Symposium as part of a separate PCORI Engagement Award (2972-WSUSM; Project Lead: Thompson). As part of the project described here, we integrated this objective into the agenda of the 2019 CEnR Symposium, held June 17-18. Speakers included:

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• Scout, Ph.D., Deputy Director, National LGBT Cancer Network; Boston University School of Public Health. Topic: Opportunities and Challenges in Funding and Conducting LGBTQ Health Research.” • Charles Kamen, Ph.D., Assistant Professor, , Cancer Control, University of Rochester Medical Center, School of Medicine and Dentistry. Topic: “My Partner is My Family”: Care Experiences among LGBT Patients with Cancer. The agenda also included a presentation from LGBT-Detroit CAC discussing their research priorities, led by CAC member Megan Mulvaney. CAC members also met informally with researchers and other attendees during a networking lunch where a poster describing their CAC and research priorities was presented. The symposium ended with an LGBTQ Services Panel: Research Collaborations and Experiences. Panelists were Curtis Lipscomb, Executive Director, LGBT Detroit; Angie Perone, Director, SAGE Metro Detroit; Brayden A. Misiolek, Executive Director/Co-Founder, Transcend the Binary. Total attendance across faculty, community stakeholders, staff, and volunteers was 147.

PROGRAM EVALUATION DATA

Closed-ended evaluation questions were administered CAC members’ to assess their experience in the project. These included 1) 6 items assessing sense of involvement and belonging (e.g., I feel comfortable expressing my opinions in meetings); 2) 3 items assessing perceived productivity (e.g., The group identifies possible solutions to problems; 3) 2 items assessing trust (e.g., I am willing to express my point of view); 4) 4 items assessing satisfaction with staff and the project (e.g., I am satisfied with the way staff members prepare and structure meetings); 5) one item assessing sense of individual influence (e.g., I am satisfied with the amount of influence I have over decisions related to the research study); 6) 4 items assessing commitment (e.g., I feel strongly committed to this research study); 7) 4 items assessing satisfaction with the collaborative process (e.g., I am satisfied with the process used to create research study priorities and general the research model); and 8) 5 items assessing expectations regarding knowledge translation and dissemination (e.g., The group will continue to expand and strengthen awareness of cancer survivorship in the community. These results are presented in Table 3. Evaluations across domains were high, with increases from 6 months to 18 months in all areas.

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Table 3. Program evaluation data (proportion of members with similar responses)

6 12 18 months months months (%) (%) (%) Involvement & belonging. Often/always 1. I feel comfortable expressing my opinion in CAC meetings. 85.7 100 100 2. I point out ways to proceed when the CAC is stuck. 71.4 71.4 83.3

3. I feel my opinion is considered by other council members. 42.9 42.9 100 4. I feel like a part of the CAC. 100 100 100 5 I think of ending my involvement with the CAC. 0 0 0 6. I understand my role in the CAC. 57.1 85.7 100 Productivity Often/always 1. The CAC identifies important issues to keep the project moving forward. 100 100 100 2. The CAC identifies possible solutions to problems. 100 100 100 3. The CAC makes necessary decisions to keep the project moving forward. 100 100 100 Trust Remained the same or increased 1. My willingness to express my point of view has… 100 100 100 2. Trust between the council members has 100 100 100 Satisfaction with staff and project Satisfied/extremely satisfied 1. The way Detroit HealthLink staff members prepare and structure in-person 100 100 100 meetings. 2. The way Detroit HealthLink staff members communicate with council 100 100 100 members outside of meetings (email, phone, mail, etc.) 3. Progress on the project. 100 100 100

4. The impact of the project on my community. 100 100 100 Individual influence Satisfied/extremely satisfied 1. The amount of influence I have over CAC decisions. 100 100 100 Research interest Likely/extremely likely 1. Get involved in other cancer research programs. 85.7 100 100 2. Seek out new research programs related to cancer. 100 100 100 3. Seek out other research-based programs that engage or involve community 71.4 100 83.3 members. Commitment Agree/strongly agree 1. I really care about the future of this CAC. 100 100 100 2. I am proud to tell others I am on this CAC. 100 100 100 3. I feel strongly committed to this CAC. 100 100 100 4. I feel a strong sense of pride in CAC accomplishments. 100 100 100

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Satisfaction with CAC Satisfied/very satisfied 1. The process used by the CAC to create research priorities and generate 100 100 100 research questions. 2. CAC activities meet Detroit HealthLink project objectives. 100 100 100 3. The level of CAC member involvement with program activities. 100 100 100 4. Overall CAC functioning. 100 100 100 Expectations of CAC Likely/very likely 1. The CAC will continue to expand and strengthen cancer awareness and 100 prevention activities in the community. 100 100 2. The CAC will increase resources for cancer research planning among 100 community members and organizations. 100 100 3. The CAC will increase resources for cancer research planning among 100 community members and organizations. 100 100 4. The Cancer Action Council activities will result in a decrease of cancer health 100 disparities in the community. 100 100 5. The Cancer Action Council will increase its influence over cancer research. 100 100 100

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