By Willy Wilkinson, MPH, Consultant, PCORI Transgender Study
Transgender people represent a sizable, underserved population with unique health needs and systemic barriers to health care access. Research on transgender health has been limited to very small studies that have not focused on long-term issues or quality of life.
This lack of research is changing with an exciting new study that partners Kaiser Permanente, Emory University, and the U.S. Veterans Administration. Funded by the Patient-Centered Outcomes Research Institute (PCORI), the project will examine long-term health outcomes for thousands of transgender and gender-nonconforming people.
Willy Wilkinson, MPH, discussed the ongoing study with Michael Goodman, MD, MPH, principal investigator, Emory University School of Public Health; Jennifer Slovis, MD, medical director, Kaiser Permanente Oakland Multispecialty Transitions Clinic; and Enid M. Hunkeler, MA, principal investigator, Kaiser Permanente Division of Research.
Why is a large-scale study of transgender health needed?
Goodman: Virtually no studies have looked at the long-term health status of transgender people. We need to learn more, for example, about the health effects of hormonal therapy and post-operative issues, and figure out better ways to follow patients after gender confirmation surgery.
Slovis: The transgender community may be underserved because they are avoiding care or they may not be disclosing to their physicians. The data that we have on treating this population come from outdated studies, often with medications no longer in use, or the experiences of specific treatments on cisgender people. In order to understand how this population’s medical needs are different, we need to hear from transgender and gender-nonconforming people themselves.
What do you hope to learn?
Slovis: This study will enable us to identify specific and unique health care needs, beyond hormones and surgery. Do trans individuals have certain chronic medical conditions such as diabetes or hypertension? Are their preventive needs being addressed, such as pap smears for men with a cervix? If hormones and surgeries are applicable, what related needs do they have?
How many people do you hope to include? What are your sources of information?
Goodman: We have about 12,000 anonymous electronic medical records (7,000 selected among current and former members of Kaiser Permanente and the rest from the VA), by far the largest data set on transgender individuals anywhere. A selected sample of about 2,000 current Kaiser Permanente members in California are being invited to participate in a detailed survey, and veterans are being contacted through support groups.
How did you determine what to ask in the survey?
Hunkeler: In 2012, we asked more than 200 members of the trans community what questions were important to them, and these questions were incorporated into the survey. In addition to researchers and clinicians, the study has hired transgender advisors.
How can you ensure the confidentiality of study participants?
Hunkeler: The data used in this study contain only de-identified study ID numbers. All data are analyzed in aggregate without identifying specific individuals.
How can you ensure diversity with regards to race, ethnicity, socioeconomic status, disability and other factors?
Goodman: First, we will make sure that we have strong, robust data through Kaiser Permanente and the VA systems. In the future we hope to include participants from clinics in large cities that have a wider mix of racial and ethnic backgrounds.
How does this study benefit the community?
Slovis: This is an incredible opportunity for transgender and gender-nonconforming people to educate the medical and research community about their particular health care needs and to help shape a health care model for generations to come.