LGBT Best and Promising Practices Throughout the Cancer Continuum
Explore the best and promising practices, understand cross-cutting issues, and filter the strategies throughout the stages of the cancer continuum.
To learn about the people involved, the methodology employed, and, of course, the more than 100 Best and Promising Practices, download the full report.
Ensure that disclosure of SOGI and sexual behavior is safe (confidential, private, affirming, accepted without judgment) during all individual intake and clinical/community encounters.
Cross-Cutting Issues
Recognize that disclosure of layered and intersectional identities is complicated for LGBT individuals seeking health prevention services. They must negotiate whether and how to come out to multiple providers about being LGBT.
Cross-Cutting Issues
Create a welcoming and safe environment for LGBT patients (including but not limited to gender-neutral restrooms, physical and virtual environments, forms, health literature, and in-person communications occurring in the health setting).
Cross-Cutting Issues
Acknowledge and prioritize health promotion programs in consultation and collaboration with the LGBT communities within your service area to ensure that messages are targeting the communities’ perceived needs.
Cross-Cutting Issues
Develop and implement effective guidelines, interventions, and programs aimed at decreasing the cancer burden for LGBT populations, with intentional and careful adaptation for all segments of the LGBT communities.
Cross-Cutting Issues
Public Health Department Recommendation:
Seek and fund programs and campaigns that address LGBT cancer prevention and health promotion.
Cross-Cutting Issues
Public Health Department Recommendation:
Enhance patient navigation projects (where available) to provide culturally relevant services for LGBT cancer survivors.
Cross-Cutting Issues
Public Health Department Recommendation:
Implement and support LGBT-tailored programs, messages, and policies that improve access to physical activity, nutrition, obesity prevention, smoking cessation, cancer awareness, cancer related vaccines (i.e., human papillomavirus (HPV) immunizations), and chronic disease programs.
Cross-Cutting Issues
Public Health Department Recommendation:
Include LGBT communities in state cancer plans.
Cross-Cutting Issues
Public Health Department Recommendation:
Include LGBT community-based organizations in state cancer coalitions.
Identify LGBT individuals who are at higher risk for cancer and revise screening guidelines to incorporate LGBT-inclusive risk assessment.
Cross-Cutting Issues
Eliminate discriminatory and arbitrary exclusion from screening procedures due to discordance between gender markers and anatomy.
Cross-Cutting Issues
Work with the local LGBT communities to identify and reduce regional and specific barriers to timely cancer screening.
Cross-Cutting Issues
Ensure that LGBT patients receive prompt follow up after abnormal screening results, as well as timely and culturally competent coordination of transition to cancer care in order to mitigate attrition and delays.
Cross-Cutting Issues
Include LGBT individuals’ support networks (i.e., family of choice) whenever possible during screening process and procedures.
Cross-Cutting Issues
Public Health Department Recommendation:
Provide management, leadership, and coordination for LGBT-centered screening promotions.
Cross-Cutting Issues
Public Health Department Recommendation:
Adopt federal model of requiring LGBT non-discrimination policy statements for all Health Department-funded entities.
Cross-Cutting Issues
Public Health Department Recommendation:
Establish partnerships with multiple (3 minimum, local or national) LGBT organizations to vet and provide technical assistance in the development and implementation of screening campaigns/materials.
Cross-Cutting Issues
Public Health Department Recommendation:
Support culturally competent delivery of services that increase access to and utilization of cancer screening.
Cross-Cutting Issues
Public Health Department Recommendation:
Support recruitment and utilization of patient navigators that are culturally competent and sensitive to the disparities and needs of the LGBT population.
Collect and include SOGI data in patient intake and registration forms, medical records, patient satisfaction surveys, and health outcome measures. Then ensure SOGI data are collected in cancer registries, other population-based registries, and databases.
Cross-Cutting Issues
Include LGBT individuals in research trials of diagnostic tests.
Cross-Cutting Issues
Develop guidelines for culturally competent LGBT patient navigation programs including training for all patient navigators.
Cross-Cutting Issues
Mitigate delays and attrition between screening and diagnosis, and between diagnosis and treatment in compliance with established guidelines by ensuring timely and culturally competent coordination of care.
Cross-Cutting Issues
Provide gender-neutral diagnostic facilities and programs – particularly in relation to gendered cancers (e.g., breast or gynecological cancers) that may take place in gender-specific facilities.
Cross-Cutting Issues
Eliminate discriminatory and arbitrary exclusion from diagnostic testing, (e.g., due to discordance between gender markers and anatomy).
Cross-Cutting Issues
Anticipate, identify, and eliminate barriers to diagnostic procedures for LGBT individuals and communities.
Cross-Cutting Issues
Include patients’ support networks (i.e., family of choice) during diagnosis and decision making.
Cross-Cutting Issues
Public Health Department Recommendation:
Support policies and programs that address LGBT compliance with established clinical time intervals from screening to diagnosis.
Include SOGI categories as part of core demographic data in clinical studies/trials and a requirement for human subject research.
Cross-Cutting Issues
Collect SOGI data in patient intake forms, clinical encounters, patient satisfaction surveys, and health outcome measures. Then ensure SOGI data are collected in cancer registries, other population-based registries, and databases.
Cross-Cutting Issues
Ensure compliance with treatment guidelines regardless of SOGI or gender transition care.
Cross-Cutting Issues
Ensure nondiscrimination on the basis of SOGI in hospital visitation, surrogate medical decision making, etc. for Centers for Medicare & Medicaid Services and Joint Commission Accrediting Standards.
Cross-Cutting Issues
Ensure the inclusion of LGBT individuals in all private and public human subjects cancer research.
Cross-Cutting Issues
In the absence of LGBT-specific treatment guidelines, follow standard of care/current treatment data to meet the standard of care.
Cross-Cutting Issues
Ensure timely and culturally competent coordination of care in order to mitigate delays and attrition between screening and diagnosis and between diagnosis and treatment to comply with established guidelines.
Cross-Cutting Issues
Provide gender neutral diagnostic facilities and programs for all cancers, including cancers traditionally treated in gender-specific facilities.
Cross-Cutting Issues
Address sexual intimacy and other quality of life (e.g., fertility, gender reassignment surgery) concerns as they relate to treatment options.
Cross-Cutting Issues
Be aware of and responsive to barriers based on SOGI in symptom management.
Cross-Cutting Issues
Public Health Department Recommendation:
Support policies that address and encourage LGBT culturally competent treatment.
Cross-Cutting Issues
Public Health Department Recommendation:
Support policies and programs to improve LGBT compliance with established clinical time intervals from screening to treatment.
Cross-Cutting Issues
Public Health Department Recommendation:
Collaborate with hospitals and other health care systems to include LGBT issues in Patient Bill of Rights.
Cross-Cutting Issues
Public Health Department Recommendation:
Create and/or expand culturally competent LGBT provider listings/registries.
Offer LGBT cancer survivors access to culturally competent support services either through the creation of LGBT-specific support groups, referrals to community groups, or at a minimum training support service staff to provide LGBT culturally competent care.
Cross-Cutting Issues
Offer LGBT families of choice access to culturally competent support services either through the creation of LGBT-specific groups, referrals to community groups, or at a minimum training support service staff to provide LGBT culturally competent care.
Cross-Cutting Issues
Address directly (or via referral) the legal and financial impact of cancer on LGBT individuals and their families of choice.
Cross-Cutting Issues
Develop protocols for protecting the fertility options of LGBT cancer patients prior to treatment and include survivors in decision making about fertility.
Cross-Cutting Issues
Public Health Department Recommendation:
Eliminate barriers to access.
Cross-Cutting Issues
Public Health Department Recommendation:
Collaborate with hospitals and other health care systems to include LGBT issues in Treatment Summaries and Cancer After Care Plans/Survivorship Care Plans.
Cross-Cutting Issues
Public Health Department Recommendation:
Develop and maintain a list of LGBT culturally competent support groups, programs, and resources.
Collect SOGI data for all patients at initial encounters, and create individualized plans in regard to disclosure or nondisclosure of SOGI to others.
Cross-Cutting Issues
Provide in-person and/ or virtual access to culturally competent and/or LGBT-specific bereavement programs for LGBT support networks (i.e., family of choice), recognizing the increased risk for disenfranchised grief.
Cross-Cutting Issues
Address the increased risk of mental health problems and unique psychosocial barriers that exist for some LGBT cancer patients, and ensure that existing quality standards for pain and symptom management are met.
Cross-Cutting Issues
Ensure timely care coordination for LGBT patients including prompt referral to culturally competent palliative care providers soon after diagnosis to reduce distress, improve symptom management, and increase retention in treatment.
Cross-Cutting Issues
At the end-of-life, dignified death is a priority for LGBT patients. Unique topics such as continuation of hormone therapy for transgender patients as well as respect for patient choice of burial and death rituals need to be addressed.
Cross-Cutting Issues
Include psychosocial distress, suicide risk, financial planning, relationship with family of origin, and current families of choice when performing screening and intake of LGBT cancer patients.
Cross-Cutting Issues
Discuss and formalize surrogate decision-making during initial patient encounter, including medical proxy documentation, formalization of custody of dependent children, and hospital visitation forms. Recognize that it is a patient’s legal right to include family of choice. These discussions must reflect rapidly changing laws, regulations, and accrediting standards at the national, state, and institutional levels. Advance directives and Physician Orders for Life Sustaining Treatment (POLST) should follow patients across multiple care settings.
Cross-Cutting Issues
Public Health Department Recommendation:
Eliminate barriers to access.
Cross-Cutting Issues
Public Health Department Recommendation:
Support policies, systems change, research, and programs that increase the availability of culturally competent end-of-life and palliative care for the LGBT community.
Ensure that disclosure of SOGI and sexual behavior is safe (confidential, private, affirming, accepted without judgment) during all individual intake and clinical/community encounters.
Cross-Cutting Issues
Recognize that disclosure of layered and intersectional identities is complicated for LGBT individuals seeking health prevention services. They must negotiate whether and how to come out to multiple providers about being LGBT.
Cross-Cutting Issues
Create a welcoming and safe environment for LGBT patients (including but not limited to gender-neutral restrooms, physical and virtual environments, forms, health literature, and in-person communications occurring in the health setting).
Cross-Cutting Issues
Acknowledge and prioritize health promotion programs in consultation and collaboration with the LGBT communities within your service area to ensure that messages are targeting the communities’ perceived needs.
Cross-Cutting Issues
Develop and implement effective guidelines, interventions, and programs aimed at decreasing the cancer burden for LGBT populations, with intentional and careful adaptation for all segments of the LGBT communities.
Cross-Cutting Issues
Public Health Department Recommendation:
Seek and fund programs and campaigns that address LGBT cancer prevention and health promotion.
Cross-Cutting Issues
Public Health Department Recommendation:
Enhance patient navigation projects (where available) to provide culturally relevant services for LGBT cancer survivors.
Cross-Cutting Issues
Public Health Department Recommendation:
Implement and support LGBT-tailored programs, messages, and policies that improve access to physical activity, nutrition, obesity prevention, smoking cessation, cancer awareness, cancer related vaccines (i.e., human papillomavirus (HPV) immunizations), and chronic disease programs.
Cross-Cutting Issues
Public Health Department Recommendation:
Include LGBT communities in state cancer plans.
Cross-Cutting Issues
Public Health Department Recommendation:
Include LGBT community-based organizations in state cancer coalitions.
Identify LGBT individuals who are at higher risk for cancer and revise screening guidelines to incorporate LGBT-inclusive risk assessment.
Cross-Cutting Issues
Eliminate discriminatory and arbitrary exclusion from screening procedures due to discordance between gender markers and anatomy.
Cross-Cutting Issues
Work with the local LGBT communities to identify and reduce regional and specific barriers to timely cancer screening.
Cross-Cutting Issues
Ensure that LGBT patients receive prompt follow up after abnormal screening results, as well as timely and culturally competent coordination of transition to cancer care in order to mitigate attrition and delays.
Cross-Cutting Issues
Include LGBT individuals’ support networks (i.e., family of choice) whenever possible during screening process and procedures.
Cross-Cutting Issues
Public Health Department Recommendation:
Provide management, leadership, and coordination for LGBT-centered screening promotions.
Cross-Cutting Issues
Public Health Department Recommendation:
Adopt federal model of requiring LGBT non-discrimination policy statements for all Health Department-funded entities.
Cross-Cutting Issues
Public Health Department Recommendation:
Establish partnerships with multiple (3 minimum, local or national) LGBT organizations to vet and provide technical assistance in the development and implementation of screening campaigns/materials.
Cross-Cutting Issues
Public Health Department Recommendation:
Support culturally competent delivery of services that increase access to and utilization of cancer screening.
Cross-Cutting Issues
Public Health Department Recommendation:
Support recruitment and utilization of patient navigators that are culturally competent and sensitive to the disparities and needs of the LGBT population.
Collect and include SOGI data in patient intake and registration forms, medical records, patient satisfaction surveys, and health outcome measures. Then ensure SOGI data are collected in cancer registries, other population-based registries, and databases.
Cross-Cutting Issues
Include LGBT individuals in research trials of diagnostic tests.
Cross-Cutting Issues
Develop guidelines for culturally competent LGBT patient navigation programs including training for all patient navigators.
Cross-Cutting Issues
Mitigate delays and attrition between screening and diagnosis, and between diagnosis and treatment in compliance with established guidelines by ensuring timely and culturally competent coordination of care.
Cross-Cutting Issues
Provide gender-neutral diagnostic facilities and programs – particularly in relation to gendered cancers (e.g., breast or gynecological cancers) that may take place in gender-specific facilities.
Cross-Cutting Issues
Eliminate discriminatory and arbitrary exclusion from diagnostic testing, (e.g., due to discordance between gender markers and anatomy).
Cross-Cutting Issues
Anticipate, identify, and eliminate barriers to diagnostic procedures for LGBT individuals and communities.
Cross-Cutting Issues
Include patients’ support networks (i.e., family of choice) during diagnosis and decision making.
Cross-Cutting Issues
Public Health Department Recommendation:
Support policies and programs that address LGBT compliance with established clinical time intervals from screening to diagnosis.
Include SOGI categories as part of core demographic data in clinical studies/trials and a requirement for human subject research.
Cross-Cutting Issues
Collect SOGI data in patient intake forms, clinical encounters, patient satisfaction surveys, and health outcome measures. Then ensure SOGI data are collected in cancer registries, other population-based registries, and databases.
Cross-Cutting Issues
Ensure compliance with treatment guidelines regardless of SOGI or gender transition care.
Cross-Cutting Issues
Ensure nondiscrimination on the basis of SOGI in hospital visitation, surrogate medical decision making, etc. for Centers for Medicare & Medicaid Services and Joint Commission Accrediting Standards.
Cross-Cutting Issues
Ensure the inclusion of LGBT individuals in all private and public human subjects cancer research.
Cross-Cutting Issues
In the absence of LGBT-specific treatment guidelines, follow standard of care/current treatment data to meet the standard of care.
Cross-Cutting Issues
Ensure timely and culturally competent coordination of care in order to mitigate delays and attrition between screening and diagnosis and between diagnosis and treatment to comply with established guidelines.
Cross-Cutting Issues
Provide gender neutral diagnostic facilities and programs for all cancers, including cancers traditionally treated in gender-specific facilities.
Cross-Cutting Issues
Address sexual intimacy and other quality of life (e.g., fertility, gender reassignment surgery) concerns as they relate to treatment options.
Cross-Cutting Issues
Be aware of and responsive to barriers based on SOGI in symptom management.
Cross-Cutting Issues
Public Health Department Recommendation:
Support policies that address and encourage LGBT culturally competent treatment.
Cross-Cutting Issues
Public Health Department Recommendation:
Support policies and programs to improve LGBT compliance with established clinical time intervals from screening to treatment.
Cross-Cutting Issues
Public Health Department Recommendation:
Collaborate with hospitals and other health care systems to include LGBT issues in Patient Bill of Rights.
Cross-Cutting Issues
Public Health Department Recommendation:
Create and/or expand culturally competent LGBT provider listings/registries.
Offer LGBT cancer survivors access to culturally competent support services either through the creation of LGBT-specific support groups, referrals to community groups, or at a minimum training support service staff to provide LGBT culturally competent care.
Cross-Cutting Issues
Offer LGBT families of choice access to culturally competent support services either through the creation of LGBT-specific groups, referrals to community groups, or at a minimum training support service staff to provide LGBT culturally competent care.
Cross-Cutting Issues
Address directly (or via referral) the legal and financial impact of cancer on LGBT individuals and their families of choice.
Cross-Cutting Issues
Develop protocols for protecting the fertility options of LGBT cancer patients prior to treatment and include survivors in decision making about fertility.
Cross-Cutting Issues
Public Health Department Recommendation:
Eliminate barriers to access.
Cross-Cutting Issues
Public Health Department Recommendation:
Collaborate with hospitals and other health care systems to include LGBT issues in Treatment Summaries and Cancer After Care Plans/Survivorship Care Plans.
Cross-Cutting Issues
Public Health Department Recommendation:
Develop and maintain a list of LGBT culturally competent support groups, programs, and resources.
Collect SOGI data for all patients at initial encounters, and create individualized plans in regard to disclosure or nondisclosure of SOGI to others.
Cross-Cutting Issues
Provide in-person and/ or virtual access to culturally competent and/or LGBT-specific bereavement programs for LGBT support networks (i.e., family of choice), recognizing the increased risk for disenfranchised grief.
Cross-Cutting Issues
Address the increased risk of mental health problems and unique psychosocial barriers that exist for some LGBT cancer patients, and ensure that existing quality standards for pain and symptom management are met.
Cross-Cutting Issues
Ensure timely care coordination for LGBT patients including prompt referral to culturally competent palliative care providers soon after diagnosis to reduce distress, improve symptom management, and increase retention in treatment.
Cross-Cutting Issues
At the end-of-life, dignified death is a priority for LGBT patients. Unique topics such as continuation of hormone therapy for transgender patients as well as respect for patient choice of burial and death rituals need to be addressed.
Cross-Cutting Issues
Include psychosocial distress, suicide risk, financial planning, relationship with family of origin, and current families of choice when performing screening and intake of LGBT cancer patients.
Cross-Cutting Issues
Discuss and formalize surrogate decision-making during initial patient encounter, including medical proxy documentation, formalization of custody of dependent children, and hospital visitation forms. Recognize that it is a patient’s legal right to include family of choice. These discussions must reflect rapidly changing laws, regulations, and accrediting standards at the national, state, and institutional levels. Advance directives and Physician Orders for Life Sustaining Treatment (POLST) should follow patients across multiple care settings.
Cross-Cutting Issues
Public Health Department Recommendation:
Eliminate barriers to access.
Cross-Cutting Issues
Public Health Department Recommendation:
Support policies, systems change, research, and programs that increase the availability of culturally competent end-of-life and palliative care for the LGBT community.
Cross-Cutting Issues
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:
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
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
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
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
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.
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.
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.
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.
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.
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.
This report includes five cross-cutting issues, sometimes called overarching themes, which cut across the six stages of the cancer continuum and the public health section. Instead of just listing the cross-cutting issues for this document each of the best and promising practices (BPPs) has been associated with the pertinent cross-cutting issue(s). The five cross cutting issues are not exhaustive but the five that are listed are the most inclusive and universal among the BPPs in this report.
The five cross-cutting issues can also be found in different state and federal cancer control plans, scientific literature, and as focus areas of work in various government agencies. These five issues were determined via an iterative process where each of the cross-cutting themes emerged from the initial collection of BPPs found in this report, then were reinforced via the weighing of the evidence using both the scientific and gray literature.