Background: The 2019 novel coronavirus, which causes COVID-19, has impacted the health, livelihoods, and social lives of people around the world. Current public health initiatives that address COVID-19 operate without knowledge of how COVID-19 impacts transgender and gender-expansive people. Making visible the inequalities of health outcomes and the social, economic, and historical inequalities that drive these health disparities is the crucial first step toward an effective COVID-19 response. Texas is home to the second largest transgender adult population in the country, behind California. This includes 46,500 White, non-Hispanics; 16,800 African American or Black; 54,650 Hispanic or Latino; and 6,550 other races or ethnicities. Overall, 23 percent of transgender or gender-diverse respondents believed they were exposed to COVID-19 and 11 percent believe they’d already had COVID-19 prior to July 30, 2020.
Proposed Solution to the Problem: The purpose of this project is to address the urgent need for COVID-19-related transgender and gender-diverse (referred to in this application as TGD, transgender, or trans) research. The project team proposes taking advantage of an existing statewide network to engage transgender stakeholders, clinicians, researchers, payers, policy makers, and other stakeholders to rapidly illuminate the inequalities of health outcomes and social, economic, and historical inequalities that drive the health disparities described above. This project will address the unique needs of the trans population and build capacity for patient-centered outcomes research and comparative clinical effectiveness research (PCOR/CER) stakeholder engagement specifically related to the long-term effects of post-acute COVID-19; the impact of COVID-19 on this disproportionately affected and vulnerable population; and the impact of COVID-19 on social isolation and loneliness (mental health and well-being).
This project will help achieve future long-term goals including: (a) conduct PCOR/CER addressing post-acute COVID-19 health issues in Texas; (b) measurably improve transgender quality of life emphasizing Black, Indigenous, and People of Color (BIPOC) communities and social determinants of health.
Aims during the project period include:
Aim #1: Expand existing stakeholder relationships and formalize a statewide collaborative learning network addressing post-acute COVID-19 health issues in Texas.
Aim #2: Identify, categorize, and prioritize PCOR/CER topics and questions across the network.
Aim #3: Disseminate lessons learned and promising practices, processes and tools, regional virtual meeting recordings, materials, and discussions in various formats developed for different audiences.
Activities: TransFORWARD proposes the following activities to meet the goals and aims:
- Establish a leadership team of at least 17 people, and a COVID-19 PCOR/CER Research Engagement Advisory Council of at least 22 people with an initial core research Team of four people to guide the project over 18 months
- Host eight regional meetings with 16 virtual two-hour sessions to train and engage up to 512 new or existing transgender and gender-diverse patient stakeholders, in addition to clinician, researcher, payer, policy maker, and other stakeholders, increasing PCOR/CER research capacity across Texas and identifying research themes and topics related to COVID-19
- Connect trans patient stakeholders and other stakeholders across Texas to increase PCOR/CER knowledge sharing, advance research capacity building, and frame specific research projects using TransFORWARD’s member-access website
- Convene the Capstone COVID-19 PCOR/CER Summit to formalize tools and processes, prioritize TGD post-acute COVID-19 research themes and topics, seed thought leader development for three PCOR/CER projects, and continue disseminating research opportunities and reports
Projected Outcomes and Outputs:
Short-Term Outcomes (project period)
Expand development of a culture of patient-centeredness in research through meaningful and eﬀective partnerships.
- A statewide PCOR/CER collaborative learning network of engaged stakeholders focused on post-acute COVID-19 research
- A set of archived materials including slide decks, digital tools, processes, lessons learned, and meeting scripts
- A summary of prioritized PCOR/CER topics and research priorities in mental health, housing, employment, and vaccinations affecting the TGD community during the COVID-19 pandemic
- Improved member PCOR/CER knowledge sharing among stakeholders and across regions related to post-acute COVID-19 issues and their impact on a disproportionately affected population. This includes insight into transgender-specific impacts of the COVID-19 pandemic that may have reduced access to transgender-specific support and/or impeded access to gender-affirming medical and surgical care.
Medium-Term Outcomes (0-2 years post project period)
TransFORWARD expects to see medium-term outcomes in the first two years after the project concludes.
- Established a PCOR/CER research proposal development pipeline addressing TGD-driven research question topics and priorities related to the impact of COVID-19. Proposals to be developed by TransFORWARD or TransFORWARD collaborators for submission to funding sources may be grouped into categories such as:
- The impact of COVID-19 and ongoing mental health disparities for TGD people
- The role of social support in buffering minority stress during COVID-19
- The demographic differences in psychological distress during the pandemic
- The impact of the COVID-19 pandemic on TGD individuals occurring in the context of ongoing disparities
- The effect of interruption and/or delay in gender-affirming hormone therapy, medical, or surgical care
- Disseminated funded research through publications, convenings, and continuing education, expanding the TGD research footprint in academic centers, healthcare, and payor organizations
- Increased funding to support PCOR/CER TGD research in Texas, with major capacity-building infrastructure funds and funds from engagement, research, and dissemination
Long Term Outcomes (3+ years post project period)
TransFORWARD: Texas Transgender Health’s long-term goal is to create culturally competent care improving the lives of transgender Texans. Health care that is accessible, affordable, and culturally competent is essential to fostering resilience and promoting overall well-being. The long-term outcomes TransFORWARD will continue working on after the project concludes are:
- Created new guidance for medical and graduate school curriculum development in dealing with post-COVID-19 health issues. Applied new COVID-19 knowledge to clinical practice through continuing education. Created recommendations for policy makers tasked in developing programs to assist individuals during and after a pandemic, paying special attention to meeting the unique needs of TGD individuals while also addressing the longstanding disparities that impact the health and well-being of TGD individuals.
- Improved TGD lives using measurable outcomes demonstrating increases in TGD community quality of life with emphasis on BIPOC people
- Improved TGD lives using measurable outcomes in selected quality of life and well-being, health care, mental health, employment, and housing respondent answers in the US Transgender Survey and other surveys with similar TGD measures
- Improved TGD lives by reducing suicide ideation and suicide attempts
Patient and Stakeholder Engagement Plan: Capacity building is based on transgender and gender-diverse priorities. A project leadership team, COVID-19 PCOR/CER Research Engagement Advisory Council, and core research team members include a racially and ethnically diverse, multi-generational team of 43 people. This includes 20 transgender or gender-diverse team members. Region co-leads work with community grassroots organizations, FQHCs, hospitals, academic centers, therapists, physicians, and nurses working with trans local grassroots leaders to recruit regional virtual meeting participants. The leadership team and COVID-19 PCOR/CER REAC hold monthly Zoom meetings to guide the project's operation. The meetings are recorded and available to project participants. Transgender participants are compensated for their time.
Project Collaborators: TransFORWARD: Texas Transgender Health, a collaboration between Texas Health Institute and Equality Texas Foundation, UT Southwestern Medical Center with researchers at The University of Texas at Austin Dell Medical School and the University of Texas El Paso.