LGBT Best and Promising Practices Throughout the Cancer Continuum for Public Health Departments

Sexual Orientation and Gender Identity (SOGI) Data Collection

Collecting LGBT data as a core demographic variable, similar to race/ethnicity data in surveys and registries, should become the standard, not the exception, across the cancer continuum. The continued lack of SOGI data collection exacerbates LGBT invisibility and perpetuates LGBT cancer disparities, despite evidence of multiple disparities across the cancer continuum.

For example, successful data collection includes collecting SOGI measures in the following arenas:

• Research
• Evaluation
• Surveillance
• Clinical records and Insurance claims data

LGBT Culturally Competent Workforce

A requirement for providing a minimum standard of care for LGBT patients, clients, and their support systems of choice is a workforce that is culturally competent in meeting the needs of LGBT individuals, caregivers, and communities across the cancer continuum.

For example, the components of an LGBT culturally competent work force include:

• Training and continuing education on LGBT cancer topics for all levels of providers who have contact with patients and caregivers, including administrative and security staff
• Specific training on respectful and effective practices and communication

LGBT Culturally Competent Health Care Systems

Best practices call for changes in prevention and health care systems to improve health information, communication, informed decision making, and access to health services. Systemic changes in cancer care must be addressed separately from training the individuals who work within the system.

For example, needed system-wide changes include:

• Eliminating barriers to LGBT access, retention, and completion of cancer prevention and care
• Altering the health care environment, e.g., adding SOGI to intake forms and EHR, providing gender neutral bathrooms
• Addressing inequalities in policies, administration, and health insurance

Patient/Client Information and Education

Health literacy for LGBT patients, clients, and their support systems of choice require culturally competent health education resources. Such resources will help patients and clients to understand basic health information, navigate available services, and make appropriate health decisions throughout the cancer continuum. Targeted resources and programs need to be developed as a measurable standard across the cancer continuum.

For example, successful information and education programs include:

• LGBT-specific, tailored interventions across the cancer continuum
• LGBT-specific health promotion materials and events
• Targeted LGBT tools and referrals
• Funding and collaboration for community empowerment

Diversity and Intersectionality

Best Practices in LGBT cancer care require an understanding of the diversity of LGBT personal and community identities. Individual LGBT identities and the LGBT communities are shaped by a host of characteristics that include, but are not limited to, race/ethnicity, social class/economic status, sexual orientation, gender identity and expression, nationality, disability, individual health care history, oppression, and discrimination. These intersectional characteristics have different significance, expression, and denote different needs throughout the cancer continuum.

For example, a successful focus on diversity and intersectionality includes:

• Encouraging disclosure of layered LGBT identities
• Recognizing the diverse family and support systems of choice in LGBT communities
• Understanding the role of social determinants of health for LGBT individuals and communities
• Addressing the multiple stigmas many LGBT patients experience in healthcare
• Sensitivity to comorbidities in the LGBT health disparities, including those diagnoses overrepresented in the LGBT communities

Prevention/Health Promotion

This section contains best and promising practices in the arena of health promotion and cancer prevention (primary through tertiary).  Overall, these practices focus on ensuring a culturally competent health promotion workforce and on engaging and empowering the LGBT communities. Historically, local LGBT health promotion groups have focused primarily on HIV/AIDS and STIs (Sexually Transmitted Infections) care.  Issues such as cancer, cancer risk factors, and social determinants of cancer-related health have not been identified or addressed for the LGBT community due to a lack of systematic data collection. To promote LGBT cancer-related health, we must identify LGBT individuals in the population at large, develop tailored prevention and health promotion messages in collaboration with LGBT communities, and develop interventions that address social determinants of health and cancer risk factors.  Finally, we must empower individuals and communities to develop sustainable, community-based interventions to improve or maintain health.  All of these best practices must be embedded within a culturally competent and culturally safe health care system operating across the cancer continuum.

Screening

This section contains best and promising practices related to cancer screening in the LGBT communities. Given that the LGBT community has higher rates of cancer-related risk factors, such as smoking and infection with HIV/AIDS and other STIs (Sexually Transmitted Infections), culturally competent screening practices are essential for this population. Incidence and mortality rates of cancer have been decreasing in the United States, research to date anticipates a correlation with a reduction in risk factors like smoking. However, we do not yet know if this trend is reflected in the LGBT communities. Implementing culturally competent practices for screening in the LGBT communities can reduce the public health burden of cancer through early detection and early treatment in this underserved group.

Diagnosis

This section contains best and promising practices to better serve LGBT patients and their support networks through cancer diagnosis.  These practices focus on ensuring that diagnostic modalities are applied in an appropriate and culturally competent manner to the LGBT communities. Implementation of these best and promising practices may reduce disparities in access to diagnostics, and disparate health outcomes including morbidity and mortality.

Treatment

This section contains best and promising practices to better serve LGBT patients and their support networks throughout cancer treatment.  These practices focus on ensuring that treatment modalities are applied in an appropriate and culturally competent manner to the LGBT communities and that disparities in treatment outcomes are detected and eliminated by including SOGI status in relevant data collection. Implementation of these best and promising practices will reduce disparities in access to treatment, and health outcomes, including quality of life as well as morbidity and mortality.

Survivorship

A small but growing body of research confirms that LGBT cancer survivors experience additional challenges in survivorship and that these needs are rarely adequately addressed by traditional health and social services. This section contains best and promising practices that will help LGBT survivors and their support networks (i.e., family of choice) to eliminate disparate health outcomes.

Palliative Care & End Of Life

There is growing awareness of the bias and discrimination experienced by LGBT individuals, their partners, and caregivers. We have seen shifts in societal attitudes as well as expanded legal protections in areas such as hospital visitation rights and surrogate medical decision making. However, discrimination continues and is especially problematic when navigating healthcare systems including hospice and palliative care settings. LGBT individuals may distrust specific aspects of palliative medicine teams such as pastoral care because of past rejections by faith-based communities. Other barriers to culturally competent hospice and palliative care include social and familial rejection, fear of revealing minority status, lack of legal protections, and fear of discrimination at the end of life.