By Grace C. Bellinger, MS; Katie Wright, MPH; Jessie Miller; Evan Zhao, MA; A. Kai Korpak, MSW; Casey D. Xavier Hall, MPH, PhD; and Lauren B. Beach, JD/PhD
Access to primary healthcare is essential for promoting community health.1,2 Efforts to engage sexual and gender minority populations in primary care exist, but often target lesbian, gay, bisexual, and transgender (LGBT) individuals generally. Bi+ individuals comprise over half of the LGBT community and have specific needs that are not currently fulfilled by the healthcare system. We define “bi+” to include people who identify as bisexual, pansexual, queer, fluid, or with other sexual and/or romantic identities that indicate attraction to people of more than one gender. People who experience sexual and/or romantic multigender attraction but who do not use labels to identify their sexual orientation are also included in our definition of bi+.
Research has shown that bi+ people are less likely than their heterosexual, gay, or lesbian peers to have a usual source of care. Bi+ individuals who do access the healthcare system are less likely to be out to their healthcare providers. Lack of trust and communication between bi+ patients and primary care providers can make it difficult for bi+ people to receive quality healthcare.
This article provides an overview of a recent community-engaged research project led in partnership by investigators at Northwestern University, Howard Brown Health, and Bisexual Queer Alliance Chicago. Northwestern is a research-intensive university, and Northwestern’s medical center is based in Chicago. Howard Brown Health (HBH) is a federally-qualified health center specialized in providing primary care to sexual and gender minority populations in Chicago. Bisexual Queer Alliance Chicago (BQAC) is a Chicago 501(c)(3) bi+ nonprofit. The primary goal of the study our team conducted was to identify barriers bi+ individuals face when accessing primary care and ways providers can make primary care a safer space for bi+ people.
This collaborative effort received funding through the Northwestern Primary Care Practice-Based Research Program Seed Grant Program. Community engagement was critical given that bi+ people can be harder to reach than heterosexual, gay, or lesbian individuals. This difficulty stems from myriad reasons, including lack of sexual identity disclosure due to biphobic stigma and general mistrust of research teams that do not include bi+ leaders and community organizations. Via the contributions of former board President Jessie Miller, BQAC was involved since the project’s inception, an important tenet of best practice in community-engaged research. Indeed, our team structured our collaborations according to a community-engaged research model adapted for working on bi+ health research with bi+ populations—the “Bi Us, For Us” model.
The project began with Stakeholder-Academic Resource Panels (ShARPs), which are community conversations similar to but less formal than focus groups. BQAC helped recruit bi+ individuals for the ShARPs. Bi+ ShARP participants provided feedback about barriers and facilitators to engaging in primary care in Chicago. Following completion of the ShARPs, the study team both selected existing validated survey scales and drafted novel survey items using feedback from the ShARPs as well as BQAC’s board. Survey questions broadly focused on respondents’ engagement in, satisfaction with, and quality of healthcare. Participants were asked questions pertaining to strengths and weaknesses of patient-provider communication and healthcare delivery. Other survey items evaluated the level of trust each respondent had for their provider(s) and opinions regarding respect and privacy. The survey also queried how participants prefer that their primary care providers learn about their sexual orientation as well as how they would prefer to be asked questions related to sexual history and sexual activity. BQAC board members as well as HBH providers and other staff reviewed and approved a final draft of the survey.
The survey scales and items were selected to allow the study team to explore how patient “outness” in terms of sexual identity or sexual behavior may influence bi+ individuals’ satisfaction with their healthcare interactions and vice versa. Preliminary analytical goals included conducting descriptive statistics of demographic and insurance information across a variety of participant characteristics. We additionally sought to describe preferred safe space identifiers and bi+ individuals’ responses to questions regarding outness, intersectional stigma, and privacy. The study team was especially interested in associations between outness inventory responses and preferences for safe-space identifiers for bi+ people.
With the survey and a preliminary analytical plan in place, the study team began participant recruitment. Eligibility criteria for the survey study included being 18 years or older, currently living in Chicago, and being bi+. Participants were recruited for the survey through two different methods. Half of participants were recruited from the Chicago community via social media ads. These participants were not necessarily engaged in healthcare. The other half were recruited as patients engaged in primary care services at HBH. Patients at HBH were recruited by utilizing HBH’s electronic health record data to identify patients who indicated interest in participating in research and who met all inclusion criteria. Study leads, including Katie Wright, attempted to contact eligible HBH patients, spoke with them about the research opportunity, and provided them with a survey link and stipend upon completion of the survey. Particular effort was made across both study arms to reach people of color, transgender and gender nonconforming individuals, and cisgender men, as these groups are historically underrepresented in bi+ research.
In total, HBH study leads contacted 305 eligible patients, and survey links were sent to 217 patients. Of these, 124 HBH patients completed the survey and 113 were included in the preliminary analytical set. On average, HBH participants were 26.7 years of age and 86% reported having health insurance. Fifty-three (46.1%) participants identified as bisexual, 39 identified as queer (33.9%), and 18 identified as pansexual (15.7%), with the remaining 5 respondents identifying as fluid, no label, another identity, or multiple identities. By gender, 44 HBH participants were men (38.3%), 34 were women (29.6%), 10 were non-binary (8.7%), and 10 were gender-queer/non-conforming (8.7%), with the remaining 17 participants identifying as another label and/or multiple of the aforementioned identities. Fifty-one participants were Black/African American (44.3%), 34 were white (29.6%), 14 were Latinx (12.2%), and 16 reported another racial/ethnic identity. For community-based recruitment, Facebook advertisements were launched in November 2021 and concluded in January 2022. This recruitment method reached a total of 11,512 people in the Cook County and Chicago areas and solicited 400 clicks. Data cleaning and analyses for the community-based participants are ongoing.
The study team hosted a public virtual panel discussion about the project on January 20, 2022. A total of 106 attendees joined the virtual event. Attendees hailed not only from Chicago, but across the United States as well as Canada, the UK, and New Zealand. Robyn Ochs served as panel moderator, and panelists included Dr. Casey D. Xavier Hall, Jessie Miller, Eric Medina, and Nicole Holmes. Dr. Xavier Hall presented preliminary findings from the HBH health services research arm and represented Northwestern University on the panel. All panelists shared their personal experiences with primary care providers. They also provided suggestions for how and when to come out to a provider and recommendations for providers about delivering inclusive care to bi+ patients. These suggestions included not making assumptions about sexual behavior based on sexual identity, not making assumptions about partner gender or relationship structure, and providing clarity on who will be able to access sexual orientation information in electronic health records. Panelists also discussed their suggestions for how to advance future bi+ health research to improve health outcomes for bi+ people and shared resources with all registrants. Themes from audience questions included intersectionality (including bi+ identities, disability, gender, race), health at every size, data privacy, how to access inclusive domestic violence and intimate partner violence services, dealing with burnout, and more. This event was a tremendous success with an active dialogue in the chat among attendees, and was only the beginning of this project’s outreach and impact.
By obtaining feedback from bi+ patients both in a healthcare system and bi+ people in the community, the “We’re Here! Identifying Bi+ Individuals’ Primary Care Needs through Collaborative Community Engaged Research” project sought to determine the barriers facing bi+ individuals in healthcare settings so they can be mitigated. Dissemination of the final results is ongoing, with a variety of scholarly and community-facing products forthcoming. Removing barriers to primary care will benefit bi+ people by promoting the health and wellbeing of bi+ populations. BQAC, HBH, and Northwestern plan to continue these collaborations to conduct research that promote the health and well-being of bi+ people. We also are open to collaborating with additional partners to expand this work. Those interested are welcome to email any team members or to contact Dr. Beach through Twitter. It is crucial that partnerships with bi+ people, organizations, and researchers at every level persist to ensure that research related to bi+ community needs is being conducted by and for bi+ people.
References:
1. Bonvicini, K. A., & Perlin, M. J. (2003). The same but different: clinician–patient communication with gay and lesbian patients. Patient education and counseling, 51(2), 115-122.
2. St. Pierre, M. (2012). Under what conditions do lesbians disclose their sexual orientation to primary healthcare providers? A review of the literature. Journal of Lesbian Studies, 16(2), 199-219.
3. Beach LB, Elasy TA, Gonzales G. Prevalence of Self-Reported Diabetes by Sexual Orientation: Results from the 2014 Behavioral Risk Factor Surveillance System. LGBT Health. 2018 Feb-Mar;5(2):121-130. doi: 10.1089/lgbt.2017.0091.
4. Gonzales G, Henning-Smith C. Barriers to Care Among Transgender and Gender Nonconforming Adults. Milbank Q. 2017 Dec;95(4):726-748. doi: 10.1111/1468-0009.12297.
5. Beach LB, Hall CDX. Bi Us, For Us: Articulating foundational principles for research in partnership with bisexual communities. J Bisex. 2020;20(3):251-272. doi: 10.1080/15299716.2020.1841478. Epub 2020 Nov 11.
6. Choi, A. Y., & Israel, T. (n.d.). Affirmative Mental Health Practice with Bisexual Clients: Evidence-Based Strategies. In Handbook of Evidence-Based Mental Health Practice with Sexual and Gender Minorities (pp. 149–172). Oxford University Press. Retrieved July 28, 2021, from https://www.oxfordclinicalpsych.com/view/10.1093/med-psych/9780190669300.001.0001/med-9780190669300-chapter-7
Acknowledgments: Funding for this project was granted to Primary Investigators Dr. Cori Blum of Howard Brown Health and Drs. Lauren B. Beach and Casey D. Xavier Hall by Northwestern University’s Primary Care Practice-Based Research Program (NP3) Seed Grant. The grant, “We’re Here! Identifying Bi+ Individuals’ Primary Care Needs through Collaborative Community Engaged Research,” was active from 09/01/2020 through 01/31/2022.