Title: Mapping Sexual Minority Populations: Building an Inclusive Health Care Infrastructure

 

Authors: Kirsten Barrett, Ph.D., Judith Bradford, Ph.D., James Ellis, M.S.

 

Abstract: This paper will highlight the ways in which United States Census data and ArcView GIS can be used together to provide policy-makers, advocacy organizations, and leaders in health care with an in-depth understanding of the socio-demographic characteristics of persons living in same-sex households. The utility of mapping to inform decisions related to the development of a health care infrastructure inclusive of sexual minority populations is discussed.

 

Introduction: Census 2000 households include nearly 600,000 that are presumed to be headed by same-sex (lesbian or gay) couples. Recent government-sponsored reports identify critical health disparities for sexual minority persons.  These reports also identify the limitations of the existing healthcare system to meet their needs. An informal network of community-based organizations has developed across the country during the past two decades and currently provides a range of health services to lesbian, gay, bisexual and transgender (LGBT) individuals and their families. Recently acknowledged by the US Public Health Service as a population experiencing health disparities and access barriers, LGBT individuals often depend on these organizations to provide "safety net services" that are otherwise unavailable or inaccessible to them. This paper highlights the ways in which United States Census data, patient/client data from a community-based health center and ArcView GIS can be used in combination to inform discussion about the readiness of health care systems to provide quality services to sexual minorities.

 

Counting Same-Sex Households within Census 2000:Over the course of the past two decades, an unprecedented opportunity to explore the characteristics of lesbian and gay households has evolved.  Through the use of decennial census data, researchers, policy makers, and advocates can access information about the socio-demographic characteristics of same-sex couples residing in the United States.  In 1990, nearly 150,000 couples self-reported as same-sex unmarried partners.  In 2000, this number increased to nearly 600,000. [1] Figures 1 and 2 depict the significant increase in the number of same sex households in the United States.

[Figure 1]

[Figure 2]

Many LGBT organizations are realizing the utility of census data for purposes of advocacy, program planning and policy development.  The Institute for Gay and Lesbian Strategic Studies (IGLSS) recently held a census symposium specifically focused on the application of census data to issues facing the LGBT community. [2]  In conjunction with the VCU Survey and Evaluation Research Laboratory, the National Gay and Lesbian Task Force (NGLTF) is developing a "Census 101" manual that will be available to the LGBT community so that they better understand how to access and interpret data.  NGLTF, Equality Florida, and The Fenway Institute have been active users of census-based choropleth maps for purposes of advocacy.  Further, public Use Microdata (PUMS) from 1990 has been analyzed in order to better understand employment and earning differences between same-sex and non-same-sex households. [3] Family structure has also been explored by researchers.[4]

 

Inclusion of Sexual Minorities as an Underserved Population in Healthy People 2010

 

Healthy People was initiated in the late 1970s as the nation’s official health promotion program. Through compilation of data from national health surveys and published research, the US Public Health Service uses this program to document the health status and needs of the population, with particular attention to disparities related to socio-demographic characteristics. In Healthy People 2010, “persons defined by sexual orientation” were recognized as a population experiencing health disparities and encountering barriers to healthcare access. Inclusion of sexual minorities within this guiding document signaled official recognition by the federal health system that these individuals will need special attention and targeted programs if their health disparities and access barriers are to be eliminated.

 

The HP2010 documents identified eight health conditions and two areas related to healthcare infrastructure that warrant special attention. Health conditions are family planning, HIV, immunization and infectious diseases, injury and violence prevention, mental health and mental disorders, sexually transmitted diseases, substance abuse, and tobacco use. Access to quality health services and the development of tailored, culturally competent educational and community-based programs were identified as infrastructure concerns. A “companion document” was subsequently written by a national working group to describe these concerns in detail, making use of available literature about sexual minority populations, [5] This document is designed for use by community-based organizations that provide services to LGBT individuals and their families.

 

LGBT Community Health Centers: A Unique Safety Net System:   More than 300 community-based organizations in the US provide LGBT-specific services, and among them are a special group of 10 centers that provide medical and mental healthcare services. Although the range and comprehensiveness of services varies among these centers, in some way all of them provide on-site, and/or through referral networks, primary healthcare and mental health core services tailored to sexual minorities. Four of these centers receive “safety net” funding from the federal government, typically based on their locations in medically underserved and/or healthcare provider shortage areas.

[Figure 3]

As can be seen in Figure 3, LGBT populations are distributed throughout the country.  However, LGBT-specific health centers are located primarily in urban areas and mostly on the east and west coasts. The lack of inclusion of targeted programs such as are offered by these centers points to healthcare infrastructure limitations found by HP2010 national working groups to warrant special concern. LGBT health centers have a vital role to play in addressing the needs of LGBT health, not only in patient care, but also in demonstrating to the larger healthcare infrastructure what it entails to provide competent healthcare for these special populations. Considerable attention is now focused upon these centers, as they consider how to respond to the needs that have been officially identified and documented through federal and scientific attention. Fenway Community Health in Boston is used as an example of how such a center is responding.

 

Fenway Community Health: Fenway Community Health was founded by community activists in 1971 in the Fenway neighborhood of Boston, Mass, and within a decade had rapidly expanded its medical services for gay men in response to the AIDS epidemic. Increased expertise and cultural competence in LGBT care led to expansion of medical services to address broader community concerns, ranging from substance use to parenting issues to domestic and homophobic violence, as well as specialized programs for lesbians, bisexuals, and transgendered individuals. Fenway began as a grassroots neighborhood clinic. In 1975, the center recorded 5,000 patient care visits; in 2000, Fenway's clinical departments recorded 50,850 visits by 8,361 individuals, including more than 1,100 individuals receiving HIV-associated care. The center now has more than 170 staff people responsible for clinical programs, community education, research, administration, planning, and development. Over the past few years, Fenway's annual budget has exceeded $10 million. Fenway has established standards for improved cultural competence about LGBT health issues for other health providers and has developed programs to educate the general community about specific LGBT health concerns. This health center may provide a model of comprehensive LGBT health services that have a local impact. [6]

Patient data are stored in an electronic medical records system at Fenway and are accessible to medical and mental health providers. This system was developed to serve a larger health delivery system, however, and does not include data of special concern for sexual minorities. In order to better understand the needs of its LGBT patients, Fenway initiated its “Core Data Project” in 2001. A set of common variables of particular relevance to health disparities and concerns for sexual minorities was developed through an interactive process with FCH providers. A six months pilot project was conducted, using a common intake form to capture these and other demographic data.   This has resulted in an unduplicated data set of 1,673 individuals. Data have proven useful for managers and staff to better understand the characteristics and needs of all center patients, and to compare these on the basis of sexual orientation and gender identity. As a result, managers, staff, and board members of this health center are beginning to envision how to shape the future of FCH as a comprehensive healthcare service for LGBT populations.

A total of 1,673 individuals completed core data intake forms during the six months pilot project. These individuals came to Fenway from all over Massachusetts, although primarily from the Boston area. Figure 4 shows the geographic locations of Fenway clients, superimposed upon location of same-sex households from Census 2000. There is some correspondence between client location and location of same-sex households, and there are areas of the state where little overlap occurs.

Fig 4

A majority (73%) of core data clients were gay, lesbian or bisexual; 30% were heterosexual, and 1.6% were transgender. Most clients were white; non-white clients were more likely to be heterosexual. Heterosexual patients were much more likely to have children. Comparison of core data clients with the health center’s medical record system demonstrated that the six months volunteer sample was reasonably representative of all health center patients seen during that time period.

Fig 5

Fig 6

Fig 7

Fig 8

Fig 9

Characteristics of these clients were consistent with HP2010 conclusions. Sexual minority patients reported higher lifetime and current rates of substance abuse and tobacco use and were more likely to report suicidal ideation and attempts. Compared with heterosexual clients, sexual minority men and women were more likely to have been physically and/or sexually abused during childhood. Homosexual males were more likely than heterosexual males to be HIV-positive; this pattern was reversed for women.

 

Core Data Project results have been quite useful for Fenway managers, staff, and board members as they review current services in light of the organization’s evolving mission as an LGBT health center. It has been very interesting for these key stakeholders to see how their patient population reflects what has been learned about sexual minorities in general.

 

Data Sources and Map Creation: Two data sources were used for this project.  First, decennial short form census data from 1990 and 2000 were used to generate maps depicting the number of same-sex households at varying levels of geography including states, counties, census tracts, and zip code tabulation areas (ZCTA).  Data from 1990 was obtained through the Inter-university Consortium for Political and Social Research (ICPSR). Data from 2000 was obtained from the United States Census Bureau website.

 

The second source of data was the core data set made available through The Fenway Institute, a division of Fenway Community Health (FCH).  This data file was created through use of a patient intake form completed during a six months pilot project conducted at the FCH health center during 2001.   The file consists of socio-demographic characteristics, including sexual orientation, gender identity, health conditions more frequently reported among sexual minority individuals, and experiences of victimization common to these populations. Approximately 1,600 unique individuals are represented in the data set. The geographic variable used in the mapping activities was zip code.

 

ArcVIEW 3.2 was used to develop the maps.  A variety of geographic boundary files were utilized.  A national boundary file made available through Esri was used as the basis for mapping the 1990 and 2000 decennial census short form data. The decennial census short form data from 1990 and 2000 were joined with the national boundary file using the state FIP as the linking variable.   

 

The ZCTA boundary file for Massachusetts was downloaded from the United States Census Bureau website and was used as the basis for mapping of the 2000 decennial census data and for mapping the data contained in FCH’s core data set. Data from Census 2000 was joined with the ZCTA boundary file using ZCTA as the linking variable. FCH’s core data set was also joined with the ZCTA boundary file using zip code as the linking variable. [7]  

Once tables were linked, a series of choropleth maps were generated.  Maps were created to visually display the distribution of same-sex households at varying levels of geography.  In addition, maps depicting the location of FCH clients with certain sociodemographic characteristics were made.   In some instances, decennial census data was superimposed on FCH client maps to provide greater context for understanding the data.  Layouts of maps were then created in ArcVIEW 3.2 and subsequently exported as .jpeg files.

 

Summary:  Mapping of relevant data sets has been very useful to stakeholders of an LGBT-focused community health center, as it evolves from a primary care service built around HIV care, to a comprehensive healthcare organization, serving the multiple needs of sexual minority individuals and their families. Fenway providers feel more certain that their service models may contribute to the development of effective practices with LGBT populations. Fenway board members are increasingly knowledgeable about how health center clients reflect what is recognized at the federal level and more confident about how to lead the agency through policy initiatives.

 

Fenway health center stakeholders are also very interested in the implications of using Census data to inform their planning. Massachusetts’ rates of same-sex household reporting are among the highest in the US. As the field of LGBT health moves into family planning and healthcare – increasing numbers of lesbian and gay couples are giving birth to or adopting children – the utility of these data for understanding sexual minority families is apparent. Using GIS to display Census and client data has been very effective in assisting these groups to grasp and to “picture” what had heretofore been just “words and numbers.”