Community Based Participatory Research with Under- and Uninsured LGBT Identified Women to Increase Breast and Cervical Cancer Education and Screening: Lessons Learned

Introduction: The literature suggests that lesbian, gay, bisexual, and transgender (LGBT)-identified women have multiple barriers to care.  In particular, screening for breast and cervical cancers remain low for this population, even though behavioral risk factors for these cancers (i.e., smoking, alcohol use, obesity and nulliparity) are high.  Regarding cervical cancer, there is a misconception that women who exclusively have sex with women are not at risk for developing HPV.  However, cytological abnormalities including HPV infection have been found in this population.  Moreover, a recent study suggests that bisexual women had twice the prevalence of cervical cancer than all other women. In another study, older lesbian and bisexual women were less likely to have pap tests than younger lesbians and heterosexual women.  Furthermore, racial and ethnic minority LGBT women tend to be at an increased disadvantage. These women are less likely to have breast exams and pap tests than heterosexual racial and ethnic minority women.  Ultimately, the risks for cervical and breast cancers are high for LGBT women.

Purpose: Through a collaboration of academic scholars, community members, and community leaders at the Lesbian Health Initiative (LHI), this community-based participatory research (CBPR) was initiated to eliminate health disparities and improve health outcomes of under- and uninsured LGBT women at risk for cervical and/or breast cancer. This project had three goals; (1) to increase the number of inquiries for cancer education (2) increase the number of LGBT women recruited for preventive screenings (i.e., mammograms and pap tests) and (3) increase retention (i.e., decrease the number of “no-shows” for the preventive screenings.)  This research was supported through a cancer control mini-grant in Texas.

Methods: Via their biannual health fairs and partnerships with community health services, LHI provides access to mammograms, pap tests, and other health care screenings free of charge to under- and uninsured LGBT women.  To increase inquiries for cancer education and screening, multiple methods of outreach to the LGBT community had been used.  To meet recruitment & retention goals, ProjectSAFe, an evidence-based model of patient navigation designed specifically to help at-risk populations overcome barriers to screening and follow-up care, was adapted.  It was our hypotheses that multiple outreach methods would lead to a greater number of inquiries for cancer education and that integrating ProjectSAFe would increase the number of preventive screenings and lessen the number of “no shows” compared to the previous ye

Results: Preliminary results are promising suggesting a 16% increase in the number of health care inquiries including a 60% increase in Hispanic/Latina and African American LGBT women requesting education; a 12% increase in the number of LGBT women registering for mammograms and pap tests; and a 55% decrease in “no-shows” for cancer screenings over the previous year.

Implications: Implications include utilizing lessons learned to fine-tune current processes and develop future projects, benchmark this project for implementation in other cities, and embracing social work practice skills (i.e. communication and negotiation) as well as academic expertise to develop and maintain relationships with community leaders and volunteers.