community-driven framework

As a first-ever initiative in the state of Michigan, the Trans Health Research Advisory Board (MI-THRAB) established a framework to guide research and program development. Funded by the Michigan Institute for Clinical Health Research (MICHR), and led by the continued partnership of Transcend the Binary and the University of Michigan, the board was charged with identifying the following:

• Trans health research priorities
• Best practices for researchers 
• Dissemination guidelines

The resulting report conveys these guidelines, emphasizing the urgency and significance set for by the board. Too often, research does not lead to real change. MI-THRAB report provides expertise and guidance directly from the intended benefactors of trans health and research. With growing recognition of the efficacy of Community-Based Participatory Research (CBPR) methods, we believe that these guidelines offer a roadmap that extends beyond research and can be applied to healthcare systems and professional practices, service agencies and nonprofits, advocacy efforts (such as Medicaid for All), and promote community leadership in the development and fulfillment of community solutions. 

“We have an incredible opportunity to build a framework that will guide future research. This means that our work together will impact how data is collected, analyzed and shared – data that will equip future advocacy efforts, push for inclusionary shifts in insurance, and inform progress in policy to better address our community’s needs.”

–

Brayden Misiolek (Transcend the Binary) 

methods

Over thirty individuals submitted applications to join the Advisory Board, meeting the eligibility criteria of 1.) 18+ years old; 2.) current residency within the state of Michigan; 3.) belonging to the trans/gender diverse community, which encompasses non-cisgender identities and diverse gender expressions and identities; 4.) capacity to engage in online forum discussions as well as availability for a hybrid in-person/virtual retreat. The selection process considered each applicant holistically, weighting lived experience heavily as recognized expertise, as we established a broad and diverse board of ten members (see advisory board characteristics).  

Facilitators met with each board member individually to effectively integrate into the initiative, answer any questions, and build rapport. The board reviewed and approved community agreements to establish a safe space for authentic and respectful engagement.  Over the course of thirteen online discussions, the board examined various topics relating to trans health, research, and community needs. In these online discussions, members were able to engage through posting responses to topics, review, and reply to other board members’ posts, as well as submit topic suggestions with facilitators. The board participated in a day-long retreat in March of 2019, which was a hybrid meeting of virtual (via video conferencing platform) integrating with those who met in person at Affirmations (Ferndale, MI). All board members were compensated for their time, and individuals who chose to meet in-person received parking reimbursements.

Facilitators guided discussions, highlighted key themes, facilitated the identitification of potential research guidelines, and facilitated the acceptance of report recommendations. Visual tools were utilized to capture ideas, group similar concepts, and board members voted for their top priorities. The retreat was audio recorded and indexed for transcription by Transcend the Binary. Assets included forum discussions, compiling online discourse for reference, which Transcend used to build the discussion guide for the retreat, as well as those visual tools created during the retreat. 

key topics 

MI-THRAB delved into the systemic barriers to health equity and gender-affirming care. Because our community consists of members across many identities (racial/ethnic, religion, nation of origin, various health statuses concerning mental illness, physical impairments, cognitive disorders; socio-economic backgrounds; formerly/currently incarcerated; sex workers; see full report for expansion) the board emphasized the inclusion of intersectional identities as a top “Research Priority” both in trans-specific studies, as well as the proper capture of transgender identities within general or disease-specific studies (e.g. diabetes). Recommendations include survey language in both population-specific and general studies for comparison data analysis. Topics included gender-affirming care, standards of care or standards of practice, training of healthcare providers, sexual and reproductive health which includes fertility, family planning as well as HIV/STI screening and prevention. Care included both evidence-based treatments (e.g. intervention science) as well as access to care, lack of comprehensive insurance coverage, and inclusion in planning for public insurance offerings (e.g. Medicaid for All). Recommendations include how to effectively partner with the trans/gender diverse community for solving for these barriers, as well as dynamic, action-centered dissemination plans for research findings because we deserve change, and it is not happening soon enough. 

advisory board characteristics

• Counties: Dickinson, Genesee, Houghton, Huron, Ingham, Oakland, Washtenaw, Wayne
• Gender identities: nonbinary, demigirlflux, transfemale, female, trans man, male
• Ages: 18 to 62 years old
• Sexual orientation: bisexual, pansexual, queer, heterosexual
• Religion: Agnostic, Atheist, Baha’i, belief in a creator that isn’t involved with us, Catholic, Christian, Episcopalian, Humanist, Non-theistic Pagan, none, questioning
• Race/ethnicity: Asian, Middle Eastern, Black, Bi-racial, Mixed white/Persian, Caucasian/White Non-Hispanic
• Income: <$10,000 to $80,000; the majority fell between $40,000 and $59,000
• Education: high school, some college, associates degree, graduate / professional degree
• Experiences: navigating Veterans Affairs, services, post-traumatic stress disorders, autism, physical disabilities, cognitive impairments, chronic illnesses, neurodivergent, mental illness/concerns