We know transgender Texans are denied healthcare altogether or have a difficult time accessing culturally competent care. For the first time, funding had been dedicated to build capacity for research projects that will engage transgender Texans all over the state. The project will allow us to produce more useful and trustworthy research, which will ultimately lead to improved healthcare for transgender Texans.

Lou Weaver, Transgender Programs Coordinator for Equality Texas Foundation and TransForward Co-Director.

This is the first time PCORI has funded a research capacity-building project focused solely on transgender, gender non-conforming, and intersex people. Quality, evidence-based health decisions will improve the quality and length of life for transgender people in Texas and across the nation. This project directly connects transgender people, clinicians, and others who can use this information to inform their healthcare decisions.

Ankit Sanghavi, BDS MPH, Executive Director of Texas Health Institute and Project Lead.

Good science drives good medicine. The Institute of Medicine recognized significant gaps in medical research involving LGBTQ people in its 2011 report. The gaps are especially profound for transgender people. We look forward to augmenting our existing relationship with TransForward to more effectively connect medical research to physicians.

David Lakey, MD, Immediate Past Chair, Council on Science and Public Health, Texas Medical Association

Background

Challenges in conducting LGBTQ+ medical research:

  • Sexual orientation and gender nonconformity are multifaceted concepts and defining them is operationally challenging.
  • Individuals may be reluctant to answer research questions about their sexual orientation or gender.
  • It is labor-intensive and costly to recruit a large enough sample in general population surveys for meaningful analysis.
  • Missing data compound the experience of LGBTQ+ people of being maligned by medicine and investigational science.

Proposed Solution

  • Engage transgender patients, family members, and other healthcare stakeholders as partners in planning, conducting, and disseminating research.
  • Apply PCORI Rubric’s framework, illustrated to the right, to operationalize engagement in all phases of this research capacity-building project.
  • Subscribe to Patient-Centered Outcomes Research (PCOR) Engagement Principles.
  • TransFORWARD will build upon existing regional relationships to create a Statewide Transgender-Powered Research Learning Collaborative.

Objectives

  • Create a 28-person Research Engagement Advisory Council to lead collaborative network development.
  • Establish a Learning Collaborative Network spanning all eight regions using technology to reduce distance, time zone, and location differences.
  • Train 10 transpeople and 10 medical providers/researchers in PCOR/CER to increase regional research capacity.
  • Host a Capstone Summit bringing together regional transgender and clinician/researcher representatives to continue engagement, identify best practices, lessons learned, and tools for continued dissemination of research opportunities and results.
Note: We are using this map for organizational purposes only. Texas DSHS is not involved in the project.

Near Term Objectives (project) 

  • Develop a culture of patient-centeredness in research and meaningful and effective partnerships. 
  • Secure 2 stakeholders (one transgender, one clinician/researcher) in each of the eight regions to actively lead state and regional efforts.
  • Increase the number of transgender people taking part in PRIDE Study to 2,500, or 2% of estimated transgender Texans.
  • Increase the number of engaged transgender people/family members, clinicians, and researchers in each of the eight regions to apply/participate in knowledge discovery, identifying, and disseminating research.
  • Submit at least two Ancillary Research Studies for PRIDE Study review.
  • Measure the degree to which participants apply what they learn during online and in-person training and the degree to which targeted near term outcomes occur as a result of the training.
  • Develop a sustainability plan for the statewide network.

Post-Project Outcomes (1-10 years)

  • Research relevant to transgender patients/other stakeholders
  • Improved use of research results in health decisions by all users
  • Improved quality health decisions enhanced by the research
  • Improved transgender patient satisfaction with healthcare experiences.

Impact

  • Embed a process where transgender people are working with researchers and clinicians to better address patient research questions, improve healthcare practice, and improve the quality of life of transgender people and their families.
  • Help create culturally competent healthcare for transgender Texans.

Project Team

Ankit Sanghavi, BDS, MPH, project lead, Texas Health Institute, executive director, asanghavi@texashealthinstitute.org

John Oeffinger, co-project lead/project manager, Texas Health Institute, director, eLearning and Training, TransFORWARD co-director, joeffinger@texashealthinstitute.org

Lou Weaver, co-project lead/transgender community liaison, Equality Texas Foundation, transgender programs coordinator, TransFORWARD co-director, lou.weaver@equalitytexas.org

Angela Sturm, MD, FACS, co-project lead/medical researcher and provider liaison, angelasturm06@yahoo.com

Sherry Wilkie-Conway, Texas Health Institute, chief operating officer

Stephanie Ondrias, Texas Health Institute, director, convenings and education

Rebecca Robertson, JD, Equality Texas Foundation, chief program officer

Jamison Green PhD, project consultant, immediate past chair WPATH (World Professional Association for Transgender Health)

TransFORWARD: A Transgender-Powered Research Collaborative in Texas is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EA #10671).