Patient-Centered Research

In the current healthcare system, scientific knowledge about best care is not applied systematically or expeditiously to clinical practice. An average of about 17 years is required for new knowledge generated by randomized controlled trials to be incorporated into practice, and even then application is highly uneven.

Sexual and gender minority people, including individuals who identify as transgender, experience health and healthcare inequities. Previous population-level studies lack sexual orientation and gender identity data. This restricts an understanding of the factors that influence the health of sexual and gender minority people. Baseline demographics, disease states, and risk factor prevalence influencing sexual and gender minority people health remain unknown.

The National Academy of Medicine’s report recognized these limitations noting the relative lack of population-based data presents the greatest challenge to describing the health status and health-related needs of sexual and gender minority people. As shifting sociopolitical landscapes have heightened awareness about sexual and gender minority human rights, the creation of a prospective research cohort can describe and then change the health landscape for sexual and gender minority people by collecting data unique to the populations.

The information Gap

Historically, the health experiences of sexual and gender minority people have not been addressed in prospective cohorts, resulting in knowledge gaps for healthcare providers. These gaps instill distrust and feelings of invisibility amongst sexual and gender minorities individuals. People who identify as transgender continue to face unique health and healthcare disparities that stem from discrimination, stigma, and a lack of information about how identities affect the person’s health. Sexual orientation and gender identity is not collected in most health studies. The result is that basic information about disease risk factors (like smoking), health promotion activities (like exercise), and unique strengths (like resilience in the face of adversity) is unknown.

Our Aspiration

Discrimination, stigma, and medical neglect contribute to the difficulty that people who identify as transgender have in accessing adequate care and achieving optimal health. In addition, many are marginalized from healthcare due to age, language, race and ethnicity, and legal or socioeconomic status. Transgender voices have not been included in most research efforts. Many studies don’t collect data that could help answer the most basic questions about transgender health.

Doing together what we can’t do alone is important in developing research activities to better the health of individuals who identify as transgender. TransForward’s goal is to identify and work with several national organizations engaged in developing longitudinal research with the transgender community. Together, a foundation for ongoing learning and research about how identity influences health can be scaled.

Want to get involved? Be sure to click Get Involved. We have a lot to do and your help will be appreciated and valued.

Want to contribute to our work to improve healthcare for people who identify as transgender? Consider making a small donation.

Research is based on data. Electronic Health Records are an invaluable research tool.
Research is based on data. Electronic Health Records are an invaluable research tool.