Abstract
Reducing health disparities for sexual and gender minority (SGM) people is a priority of the National Institutes of Health. SGM populations face barriers in cancer prevention, treatment, and survivorship care. These barriers are due to deficits in researcher and provider training and education, as well as limited National Cancer Institute funding opportunities directed at the many different SGM populations. SGM status intersects with race and ethnicity, education, geography, and poverty to exacerbate disparities further.
SGM cancer research will inform SGM patient cancer care guidelines and promote best practices in care among cancer providers. Cancer professionals may benefit from tailored training to enhance their research readiness for SGM cancer care. Research readiness can promote conduct of high impact SGM cancer research and expand the limited knowledge of SGM cancer care disparities. Here, we propose a coordinated national plan for the training and education of health science researchers and oncology providers as a key strategy to reduce SGM cancer health disparities experienced along the cancer care continuum. We describe unrecognized clinical cancer care needs of SGM patients and unmet opportunities for research partnership, and offer strategies for developing flexible educational training programs, courses, and workshops to prepare researchers and healthcare providers to promote health equity and quality cancer care for members of the SGM community.
Keywords: Cancer Health Disparities, Sexual and Gender Minorities, SGM, LGBTQ, Education and Training, Healthcare Providers, Researchers
Introduction
Reducing health and research disparities for sexual and gender minority (SGM) people is a priority of the National Institutes of Health (1), including in cancer prevention, treatment and survivorship. Guidelines for high quality cancer care for vulnerable populations, including the SGM community, cannot be developed or implemented without the support of strong empirical evidence produced by well-trained researchers and practitioners knowledgeable of the needs and culture of the target populations.
SGM is an umbrella term that includes but is not limited to men who have sex with men, women who have sex with women, lesbian, gay, bisexual, transgender, and queer-identified individuals. As SGM individuals often belong to multiple populations burdened by health disparities, including racial/ethnic minorities, those with low education levels, rural residents, and the impoverished, barriers to research and quality care for SGM patients along the cancer care continuum are intensified by intersectional dynamics (2). Moreover, deficits in health science researcher and oncology practitioner/staff training and education, together with limited National Cancer Institute (NCI)-directed SGM research funding opportunities, further deprive SGM-identified individuals of culturally appropriate and evidence-based care for cancer prevention, treatment and survivorship. There is, therefore, a tremendous need to tailor education to improve researcher and clinician knowledge of SGM cancer care needs in order to decrease health disparities for SGM cancer patients.
Providers, researchers, cancer organizations and health advocates have highlighted the significant lack of research on cancer care for SGM individuals. In 2011, the Institute of Medicine published a report reviewing SGM health disparities and highlighted the need for improved care for SGM individuals across the healthcare spectrum, including dedicated SGM cancer care initiatives (3). In 2014, a group of providers and researchers with expertise on SGM cancer care published a white paper underlining the paucity of oncology health workforce education and training on SGM health disparities (4). In 2017, the American Society of Clinical Oncology (ASCO), the largest national professional membership organization of oncologists, released a position statement citing the disproportionate burden experienced by SGM cancer patients as a result of unique cancer risks, discrimination, gaps in patient-provider communication, and quality of care, calling for increased SGM cultural competency training in health care organization and provider training curricula, training requirements, and certification exam content (3). Moreover, ASCO stipulated that the very limited research currently conducted with SGM patient populations has resulted in “insufficient knowledge about the health care needs, health outcomes, lived experiences, and effective interventions to improve outcomes for SGM individuals” (5). The LGBT Healthlink and the National LGBT Cancer Network, two national professional organizations dedicated to reducing cancer disparities for SGM populations, released a report underscoring all of these concerns (6).
In 2011, the NIH formed the NIH Lesbian, Gay, Bisexual and Transgender Research Coordinating Committee (RCC) (7). The committee published a strategic plan in 2015 to advance research on the health and well-being of SGM minorities, leading to the creation of the NIH Sexual and Gender Minority Research Office (SGMRO). To establish a benchmark for progress, the SGMRO presented a portfolio analysis finding that the NIH provided $161 M in Fiscal Year 2015 to support 301 SGM-related projects (8). The majority of funded research in SGM health focused on behavioral health and substance use treatment (9, 10), the effects of stigma and bias on mental health (11, 12), and HIV and other sexually transmitted infections (STIs) (13). The SGMRO NIH portfolio analysis reported that fewer than 10 SGM projects were funded by the National Cancer Institute (NCI) even though the NCI is included as a Participating Institute and Center (IC) in the NIH’s SGM-related Funding Opportunity Announcements (FOAs) (14).
The paucity of cancer projects funded by the NIH focusing on SGM populations may result in part from a lack of SGM cancer training for health science researchers, cancer center administrators, and cancer care providers. Researchers, clinicians and cancer care staff may be unaware of SGM health disparities, strategies to eliminate gaps in care, methods to encourage SGM health data collection, and opportunities to partner in research activities to develop evidence-based practices that will lead to improvements in SGM cancer care. In this commentary, we propose a plan for training in SGM cancer topics for health service researchers and oncologists, cancer care providers and staff working with SGM cancer patients and communities in order to increase health equity for this underserved population.
Current Gaps in SGM Cancer Research and Care
Gaps in SGM Cancer Data Collection
Numerous barriers hinder SGM cancer research, delaying discoveries and insights with the potential to enhance SGM cancer care. One large barrier is the scarcity of national data collection on sexual orientation and gender identity. During the Obama Administration, the Department of Health and Human Services (HHS) created the “LGBT Data Progression Plan” to support sexual orientation and gender identity (SOGI) data collection as required by the Affordable Care Act. Some hospitals and clinics in individual states have updated their electronic medical records systems to include SOGI data collection, but many remain noncompliant (15). Cancer-specific programs such as the Surveillance, Epidemiology, and End Results (SEER) Program of the NCI, which is used to calculate national cancer trends, collect data on gender identity (8, 29) but have not released data on intersex and transgender individuals. An email response from Cancer.gov regarding SEER Registry data collection efforts for intersex and transgender persons stated that “the numbers are small and there are concerns related to confidentiality,” therefore, “there are no current plans to begin collecting sexual orientation data for SEER at this time” (personal communication, NS, December 29, 2017) (16). While collecting these data are certainly challenging, such omissions impede longitudinal national evaluation of cancer incidence and mortality trends for SGM populations. The absence of large-scale data collection makes SGM cancer disparities difficult to identify, quantify and study.
Gaps in SGM Cancer Research Training
Whereas the SGM research field in general is young (17), SGM focused cancer research has been characterized as being in “its infancy” (18). Beyond the limited collection of SOGI data, major reasons for the slow emergence of research in cancer prevention, treatment and survivorship have been an overall lack of knowledge regarding the support and clinical care needs of SGM patients (19), inadequate training and SGM patient exposure for medical and oncology students (20), and inadequate research funding opportunities focused on developing the needed evidence-base to improve SGM-supportive protocols for oncology patients (21). Moreover, there are no known research training programs to enhance researchers’ abilities to conduct culturally responsive SGM cancer research.
This lack of training for researchers and research team members is critical as “patient centeredness is a fundamental feature of…high quality oncology care” (22, 23). SGM patients report lower satisfaction with cancer care due to deficiencies in patient-centeredness, shared decision-making (24, 25), patient-provider interactions in which the patient experiences microaggressions (26), outright discrimination, gaps in care, insufficient social support and social isolation (27). As SGM patient expectations, experiences, and ‘family’ compositions may differ significantly from those of heterosexual/cisgender patients (28), training researchers and cancer care providers interested in conducting sensitive, relevant and effective SGM research is complex. Such training efforts require not only an SGM cultural competence overview, but additional information on the effects of minority stress on SGM patients and caregivers (29), tools to engage SGM community members in participatory research, knowledge of SGM research funding resources, and skills to complete successful grant applications specific to SGM funding mechanisms. Only through a combination of new information and collaborative models, will researchers succeed in conducting appropriate and informative research and creating culturally responsive, patient-centered, sustainable SGM interventions needed to increase SGM cancer patient health equity.
Gaps in SGM Cancer Care Guidelines
Limited research focused on SGM cancer care has resulted in substandard clinical care for SGM patients. A recent study revealed that the majority of National Comprehensive Cancer Network (NCCN) guidelines do not include sexual orientation or gender identity (18). While primary care practice guidelines specific for SGM patients are beginning to emerge (30–32), NCCN’s Guidelines for Anal Carcinoma are the only clinical practice guidelines for cancer care that contain language specific to SGM populations (18). Omission of care guidelines for this vulnerable population is clearly an issue, as a study published in 2016 found that the majority of oncologists surveyed lacked knowledge regarding SGM health-related issues and did not inquire about patients’ SOGI (33).
One example of how SGM patients’ omission from guidelines negatively influences patient care, is evidenced in routine cervical screening practices. Although guidelines exist for at-risk women, SGM adolescents and young adults at risk for HPV vaccination may not receive screening at the same rates as their cisgender heterosexual peers, and transgender men are not screened for cervical cancer as well as their cisgender peers (34, 35). SGM patients cite poor access to insurance, scant numbers of culturally competent clinicians and clinics, and transgender men’s discomfort with gynecologic exams as reasons for avoiding clinical care (36). Interestingly, emerging research has revealed benefits for self-administered cervical cancer screening tests for at-risk SGM patients and transgender men (37), estimating that the introduction of HPV DNA self-sampling could increase the future rate of uptake of cervical cancer screening by 6.5% (38). Yet without sufficient research to determine the benefit of HPV DNA self-sampling for SGM patients’ and transgender men’s cervical cancer screening, or inclusion of such findings in NCCN guidelines, practice gaps will continue to lead to health disparities for SGM cancer patients. Accordingly, research is needed to ensure that guidelines reflect greater awareness of SGM patient needs for cancer prevention, screening, treatment and survivorship care (18).
Current Educational and Training Resources for Oncologists, and Cancer Care Staff
Few continuing education opportunities exist for oncologists and cancer care staff who wish to participate in research that leads to improved care for the overall SGM population, or who want to enhance their abilities to provide care for SGM patients. Summits and conferences like those organized by Building the Next Generation of Academic Physicians (BNGAP) and the Gay and Lesbian Medical Association (GLMA) create opportunities for health professionals to meet and discuss the widespread needs in SGM healthcare. These conferences host panel discussions and presentations by experts in the field, but broader SGM health issues dominate the conversations prohibiting comprehensive discussion of SGM cancer disparities and issues (39, 40). Further, conference proceedings and discussions are not always available after the conferences, limiting benefit to those in attendance.
The National LGBT Cancer Network offers training sessions to enhance the cultural competency of health centers’ staff. These training sessions are customized to include topics pertinent to and requested by specific audiences, which have included hospitals, social service agencies, and the attendees of professional conferences (41). Sessions are broken down into units which include introductions (of participants and relevant terminology and concepts), intersectionality (with a focus on the variations in oppression possible with different identities), SGM health disparities (tailored for the specific audience), and creating a welcoming environment (with an emphasis on specific action items) (42). Additionally, the National LGBT Health Education Center, a Fenway Institute program, offers CME credits to physicians who watch webinars and complete online assessments through its website. While this organization is not focused specifically on cancer, individual webinars offered include, “If You Have It, Check It: Overcoming Barriers to Cervical Cancer Screening with Patients on the Female-to-Male Transgender Spectrum,” (43) and, “Breast Cancer Risk and Prevention in Lesbian and Bisexual Women” (44). These webinars, however, are not sufficiently comprehensive to cover the spectrum of SGM population and clinical care training needs oncologists and cancer care staff require in order to provide optimal SGM patient care.
Printed and electronic resources pertaining specifically to the care of SGM cancer patients are also beginning to appear. Drs. Ronit Elk and Ulrike Boehmer have published a full-length book on the subject, Cancer and the LGBT Community: Unique Perspectives from Risk to Survivors (45). The LGBT Cancer Project and the National LGBT Cancer Network provide online resources for information on cancer care for patients. While these resources provide essential elements of training necessary to educate clinicians and staff caring for SGM patients, no comprehensive curriculum or systematic method to disseminate comprehensive education and training materials nationwide exist to ensure that clinicians and staff have the knowledge, tools and skills to participate in research with SGM patients, or the support to integrate new knowledge into daily practice in order to deliver SGM appropriate cancer care.
Recommendations for a National Action Plan to Educate and Train Cancer Researchers and Oncology Providers and Staff
Educating researchers and cancer clinicians on SGM population cancer health needs and equipping these experts with the skills necessary to address these cancer disparities requires a strategic plan. This plan outlines key objectives, describes education and training resources, and encourages stakeholder engagement while remaining adaptable for cancer care providers in unique service delivery settings, from community-based cancer programs to large hospitals and cancer centers. Specific competencies for clinical cancer providers and researchers can serve as the foundation for training and education. Health administrators and leaders may also benefit from training and education, learning how to identify and take advantage of institutional opportunities for SGM-related cancer research and implementation of equitable clinical care initiatives.
For SGM cancer research to effectively lead to patient-centered cancer care and positive health outcomes for SGM individuals, researchers must have an understanding of SGM individuals and communities; familiarity with the SGM health research field; knowledge of SGM preventive, cancer care and survivorship needs; knowledge of SGM-focused research funding; and proficiency in designing and conducting appropriate research, including participatory research involving SGM cancer patients, their social supports, oncologists and cancer care staff, and other key stakeholders. Table 1 provides an overview of some suggested competencies for SGM health researchers based on a review of the literature, authors’ experiences, and extant primary care guidelines to inform research with the SGM community (46).
Table 1:
Proposed Competencies for SGM Health Researchers
| Core Competency | Intermediate Level For researchers who identify as SGM allies and culturally competent researchers |
Advanced / Expert Level For researchers who identify as leading resources and experts on SGM-related cancer care |
|
|---|---|---|---|
| Knowledge of SGM individuals and communities | Demonstrates awareness of the individuals within and terms to address diverse members of the SGM community. | Demonstrates awareness of the individuals within and terms to address diverse members of the SGM community; has functional knowledge of LGBTQ/SGM histories (i.e., U.S. and medical). | Demonstrates awareness of the individuals within and terms to address diverse members of the SGM community; has functional knowledge of LGBTQ/SGM histories (i.e., U.S. and medical); has the capacity to communicate with others about the significance of LGBTQ/SGM histories in the ethical and participatory considerations of contemporary research projects. |
| Adept at SGM Cross Cultural Communication and Professionalism | Is able to define and give examples of microaggressions and make amends when they occur. | Is able to define and give examples of microaggressions and make amends when they occur; works actively to limit assumptions on patients’ identities, pronouns and partners. | Is able to define and give examples of microaggressions and make amends when they occur; works actively to limit assumptions on patients’ identities, pronouns, and partners; advocates for policies that limit microaggressions, assumptions, and promotes a welcoming environment. |
| Knowledge of Previous and on-going SGM medical and cancer research | Displays knowledge of histories of medical and social discrimination and bias that may increase SGM patient discomfort with clinical venues, cancer care, and health research. | Displays knowledge of histories of medical and social discrimination and bias that may increase SGM patient discomfort with clinical venues, cancer care, and health research; when working with SGM communities of color, is aware of intersectionality factors including historical trauma. | Displays knowledge of histories of medical and social discrimination and bias that may increase SGM patient discomfort with clinical venues, cancer care, and health research; when working with SGM communities of color, is aware of intersectionality factors including historical trauma. |
| Understanding of SGM patient cancer care needs | Exhibits a marked understanding of SGM patient cancer care needs. | Exhibits a marked understanding of SGM patient cancer care needs; has a basic understanding of socio-systemic factors contributing to these needs. | Exhibits a marked understanding of SGM patient cancer care needs; has a basic understanding of socio-systemic factors contributing to these needs; understands gaps in knowledge about and barriers to equitable cancer care for SGM patients. |
| Ability to Design and Conduct Participatory research involving patient, community, oncology care professionals, and other key stakeholders. | Understands how to use participatory research principles to engage SGM patient and community, oncology care professional, policy and other key stakeholders in research in culturally sensitive and appropriate manners. | Understands how to use participatory research principles to engage SGM patient and community, oncology care professional, policy and other key stakeholders in research in culturally sensitive and appropriate manners; is well versed in current SGM guidelines along the cancer continuum from prevention to treatment and survivorship. | Understands how to use participatory research principles to engage SGM patient and community, oncology care professional, policy and other key stakeholders in research in culturally sensitive and appropriate manners; is well versed in current SGM guidelines along the cancer continuum from prevention to treatment and survivorship; has knowledge of SGM-focused cancer research funding (NIH, NCI, PCORI, etc.) |
| Capable of Facilitating Practice-Based Electronic SOGI Data Collection | Demonstrates basic understanding of means necessary for collection of SOGI data from medical records at participating clinics. | Demonstrates basic understanding of means necessary for collection of SOGI data from medical records at participating clinics; understands how to utilize collected SOGI data in mixed methods research endeavors. | Demonstrates basic understanding of means necessary for collection of SOGI data from medical records at participating clinics; understands how to utilize collected SOGI data in mixed methods research endeavors; utilizes electronic medical records to conduct SGM health disparities research, monitor on-site quality metrics (e.g., SGM cancer screening rates, outcomes research, etc.) to achieve SGM health equity. |
For clinical care-competencies (knowledge, skills, abilities, and behaviors), we propose educational initiatives to prepare healthcare providers and allied health professionals to care for SGM cancer patients along the spectrum of care: cancer prevention, screening, treatment and survivorship. We recognize that not every provider can be an expert on SGM cancer care, and thus, propose a three-tiered curriculum for standard, intermediate and advanced/expert cancer care. We recommend the following competencies for Cancer Clinician Training (Table 2) based on the ACGME’s Core Competencies (47).
Table 2:
Recommended Competencies for Cancer Care Providers and Staff
| Core Competency | Standard For all cancer care providers and appropriate staff |
Intermediate Level For providers who identify as SGM allies and culturally competent providers |
Advanced / Expert Level For providers who identify as leading resources and experts on SGM-related cancer care |
|---|---|---|---|
| Demonstrates Skills with SGM Patient Care and Procedures | Demonstrates the ability to complete a physical exam with a transgender patient; demonstrates additional communication skills to gather other pertinent information, such as sexual history, mental health history, and hormone use. | Demonstrates the ability to complete a physical exam with a transgender patient; demonstrates additional communication skills to gather other pertinent information, such as sexual history, mental health history, and hormone use; demonstrates ability to perform appropriate exam on any given SGM patient, including cervical and anal cancer screenings. | Demonstrates the ability to complete a physical exam with a transgender patient; demonstrates additional communication skills to gather other pertinent information, such as sexual history, mental health history, and hormone use; demonstrates ability to perform appropriate exam on any given SGM patient, including cervical and anal cancer screenings; moreover, serve as an instructor to clinicians on the performance of physical exams and cervical/anal cancer screenings. |
| Ability to Navigate Systems-Based Practices to Enhance Patient Care | Is aware of institutional or local specialists for SGM patient cancer care needs. | Is aware of institutional or local specialists for SGM patient cancer care needs; is capable of referring patients to SGM-specific cancer support groups. | Is aware of institutional or local specialists for SGM patient cancer care needs; coordinates cancer care outside known health system; maintains and utilizes national SGM cancer specialists referral list. |
| Knowledge of SGM Medical Conditions | Exhibits knowledge of SGM community terms and basic implications for quality cancer care. | Exhibits knowledge of SGM community terms and common SGM clinical cancer care guidelines. | Exhibits knowledge of SGM community terms and all SGM clinical cancer care guidelines; is well versed in best practices; is able to modify best practices to fit local SGM patient and community needs. |
| Adept at SGM Cross Cultural Communication | Demonstrates the clinical communication skills needed for SGM patients to feel comfortable enough to disclose all relevant identities. | Demonstrates the clinical communication skills needed for SGM patients to feel comfortable enough to disclose all relevant identities; uses direct, opened-ended questions when enquiring about patient information such as sexual history, mental health history, and hormone use. | Demonstrates the clinical communication skills needed for SGM patients to feel comfortable enough to disclose all relevant identities; demonstrates additional communication skills to gather other pertinent information, such as sexual history, mental health history, and hormone use; serves as institutional resource for educating clinicians on effective communication with SGM patients. |
| Demonstrates Professionalism | Displays capacity to define and give examples of microaggressions and make amends when they occur. | Displays capacity to define and give examples of microaggressions and makes amends when they occur; works actively to limit assumptions on patients’ identities, pronouns, and partners. | Displays capacity to define and give examples of microaggressions and makes amends when they occur; works actively to limit assumptions on patients’ identities, pronouns, and partners; advocates for policies that limit microaggressions, assumptions, and promotes a welcoming environment. |
| Ensures Institutional Commitment for SGM Patient Health Standards are Maintained | Utilizes SGM appropriate terminology when greeting patients and directing their efforts to complete necessary paperwork. | Advocates use of SGM appropriate terminology on intake forms, displays antidiscrimination policies. | Advocates use of SGM appropriate terminology on intake forms, displays antidiscrimination policies. ; advocates for patient-centered care, policies to ensure visitation by members of the patient’s chosen family, and SGM culturally-sensitive shared decision-making processes. |
Educational Formats and Training Fellowships and Programs
To achieve competence in addressing the many aspects of cancer uniquely experienced by SGM individuals, professionals who comprise the research and clinical care workforce need a variety of formal educational and training strategies. These professionals – clinicians, hospital administrators, scientists - differ widely in their formal training and past experience, roles and responsibilities, and the time and resources they have available for such training. They also differ in the level of their interest in various SGM cancer topics and in the relevance of these topics to their roles. All of these differences, which influence choices of format for learning, indicate that education on SGM cancer topics must be tailored to the needs of each audience. Fortunately, in the 21st century, a multitude of new formats are available in addition to conventional in-person workshops and didactic curricula, from podcasts to webinars that can be short (e.g., introduction and use of SGM terminology), to on-demand courses and synchronous distance-learning classes offered online that can offer in-depth exploration of principles and concepts (e.g., updated research on cancer screening barriers and behaviors of various SGM groups and validated interventions and their dissemination). Formats can be static or interactive and both can be blended with other formats for greater learning impact; for example, learners can be immersed in short in-person workshops for intensive skill learning and exposure to content knowledge, and then participate afterwards in online webinars and further instruction to reinforce application of skills and knowledge, developing mastery over time. Such workshops could be offered at professional conferences at which professionals of similar formal training receive continuing medical or health education credit or on-site at individual institutions for inter-professional teams already working together for their convenience. Making education about SGM cancer issues available in a variety of formats will also help students gain access to such information when health professional curricula are challenged to fit additional content. Table 3 provides a sample educational format for the clinical competency “Practice-based learning and improvement.”
Table 3:
An Example of Educational Formats to Improve Practice-based Learning for SGM Core Competencies
| Core Competency | Standards For all cancer care providers and appropriate staff |
Intermediate Level For providers who identify as SGM allies and culturally competent providers |
Advanced / Expert Level For providers who identify as leading resources and experts on SGM-related cancer care |
|---|---|---|---|
| Practice-based learning and improvement | Utilize the electronic medical record to document SOGI data; Education: webinar, lecture, online course |
Utilize the electronic medical record to document SOGI data; Education: webinar, lecture, online course Implement SOGI data collection at individual practice level; Education: webinar on SOGI implementation, in-person lecture, small group discussion |
Lead SGM health disparities research; Education: CME conference, career development conference, NIH research development conference Monitor on-site quality metrics (e.g.: SGM cancer screening rates, outcomes research); Education: webinar, career development conference Implement and assess SOGI data collection at healthcare facility; Education: webinar on SOGI implementation, in-person lecture, research development conference |
For more intensive training, year-long or multi-year research fellowships are a feasible strategy when knowledgeable research mentors are dispersed and funds to support trainees at a premium. With the guidance of experienced researchers, trainees can spend time learning the gaps in the SGM cancer continuum, practicing the methods to collect and interpret data from members of SGM groups, and developing recommendations or interventions for improvement, thus, strengthening the workforce, albeit one individual at a time. Organizing multiple trainees into training programs dedicated to topics in cancer relevant to SGM groups would be a way to strengthen the workforce more rapidly. Such training would revolve around curricula designed to introduce trainees to specific concepts, content, methods, and practice in the field and involve mentored research experiences that would prepare them for careers leading research and activities to promote better cancer experiences for SGM individuals. Trainees at the focus of such efforts would naturally benefit, but the accrual of experts and researchers involved in the teaching and mentoring of such students would build strength in SGM cancer research and care practice as well, even if such experts were not initially dedicated to SGM cancer work.
Synthesis & Conclusion
On-going and purposeful researcher and oncology provider education are equally critical aspects of addressing health disparities for members of the SGM community receiving care along the cancer continuum. Both are essential for identifying best-practices for SGM cancer care, and for implementing SGM-focused interventions and care innovations into cancer care environments in practice enhancing, sustainable ways. To create these complementary programs of research and to produce positive cancer outcomes for SGM cancer patients and survivors, we propose a “National Action Plan to Create Health Equity for Sexual and Gender Minority (SGM) Patients through Cancer Researcher and Oncology Health Workforce Education and Training.” The National Action Plan, detailed in Figure 1, outlines a plan to activate national level priorities and develop expert partnerships and collaborations for the purpose of developing the complementary SGM cancer care curriculums described above.
Figure 1: National Action Plan to Create Health Equity for Sexual and Gender Minority (SGM) Patients through Cancer Researcher and Oncology Health Workforce Education and Training.

We recognize that training for researchers and oncology care providers is only one approach of many needed to improve the health and wellbeing of SGM individuals at risk for cancer; however, addressing research and clinical workforce issues related to SGM cancer issues can help close the practice gaps that have perpetuated health disparities in SGM communities. While patients and their families will continue to experience anti-SGM sentiment and discrimination due to homophobia, transphobia, and sexism in today’s political climate, and researchers and providers will undoubtedly continue to face difficulties collecting SOGI data due to limitations described in these pages, coordinated efforts must be taken if we are to provide quality care to this vulnerable group of cancer patients and individuals at risk. Researchers and providers must have the necessary skills and evidence-based knowledge to improve care for SGM individuals along the cancer care continuum. Recruitment of individuals interested in expanding the workforce dedicated to SGM cancer issues and their training and education in such issues is a critical priority that requires a coordinated national effort.
References
- 1.Pérez-Stable E. National Institute on Minority Health and Health Disparities. Director’s message: Sexual and gender minorities formally designated as a health disparity population for research purposes. 2016. [Google Scholar]
- 2.Kano M, Silva-Banuelos AR, Sturm R, Willging CE. Stakeholders’ Recommendations to Improve Patient-centered “LGBTQ” Primary Care in Rural and Multicultural Practices. J Am Board Fam Med. 2016;29(1):156–60. [DOI] [PubMed] [Google Scholar]
- 3.Institute of Medicine (US) Committee on Lesbian G, Bisexual, and Transgender Health Issues and Research Gaps and Opportunities. The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding. Washington (DC): National Academic Press (US); 2011. [PubMed] [Google Scholar]
- 4.Burkhalter JE, Margolies L, Sigurdsson HO, Walland J, Radix A, Rice D, et al. The National LGBT Cancer Action Plan: A White Paper of the 2014 National Summit on Cancer in the LGBT Communities. Lgbt Health. 2016;3(1):19–31. [Google Scholar]
- 5.Griggs J, Maingi S, Blinder V, Denduluri N, Khorana AA, Norton L, et al. American society of clinical oncology position statement: strategies for reducing cancer health disparities among sexual and gender minority populations. J Clin Oncol. 2017;35(19):2203–8. [DOI] [PubMed] [Google Scholar]
- 6.Buchting FO, Margolies L, Bare MG, Bruessow D, Díaz-Toro EC, Kamen C, et al. LGBT Best and Promising Practices Throughout the Cancer Continuum. Fort Lauderdale, Florida: LGBT HealthLink; 2015. [Google Scholar]
- 7.NIH. NIH FY 2016–2020 Strategic Plan to Advance Research on the Health and Well-being of Sexual and Gender Minorities: National Institutes of Health 2015. [Available from: https://dpcpsi.nih.gov/sites/default/files/sgmStrategicPlan.pdf.
- 8.Parker P, Pratt-Chapman M. LGBTQ Health Disparities: Gains we’ve made and challenges we face: National Institutes of Health 2017.
- 9.Molina Y, Lehavot K, Beadnell B, Simoni J. Racial Disparities in Health Behaviors and Conditions Among Lesbian and Bisexual Women: The Role of Internalized Stigma. LGBT Health. 2014;1(2):131–9. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 10.Cochran SD, Mays VM, Sullivan JG. Prevalence of mental disorders, psychological distress, and mental health services use among lesbian, gay, and bisexual adults in the United States. J Consult Clin Psychol. 2003;71(1):53–61. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 11.Meyer IH. Prejudice, social stress, and mental health in lesbian, gay, and bisexual populations: conceptual issues and research evidence. Psychol Bull. 2003;129(5):674–97. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 12.Meyer IH, Schwartz S, Frost DM. Social patterning of stress and coping: does disadvantaged social statuses confer more stress and fewer coping resources? Soc Sci Med. 2008;67(3):368–79. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 13.Blondeel K, Say L, Chou D, Toskin I, Khosla R, Scolaro E, et al. Evidence and knowledge gaps on the disease burden in sexual and gender minorities: a review of systematic reviews. International Journal for Equity in Health. 2016;15(1):16. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 14.NIH. NIH RePORTER: NIH Research Protafolio Online Reporting Tools; [updated 09/02/2017. Available from: https://projectreporter.nih.gov/reporter_searchresults.cfm.
- 15.Advancing LGBT Health and Well-being: U.S. Department of Health and Human Services; 2016. [Available from: https://www.hhs.gov/sites/default/files/2016-report-with-cover.pdf?language=en.
- 16.Email from SEER Registry to Nelson Sanchez. 27 December 2017. [Google Scholar]
- 17.Mayer KH, Bradford JB, Makadon HJ, Stall R, Goldhammer H, Landers S. Sexual and gender minority health: what we know and what needs to be done. American journal of public health. 2008;98(6):989–95. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 18.Hudson J, Schabath MB, Sanchez J, Sutton S, Simmons VN, Vadaparampil ST, et al. Sexual and Gender Minority Issues Across NCCN Guidelines: Results From a National Survey. Journal of the National Comprehensive Cancer Network. 2017;15(11):1379–82. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 19.Graham R, Berkowitz B, Blum R, Bockting W, Bradford J, de Vries B, et al. The health of lesbian, gay, bisexual, and transgender people: Building a foundation for better understanding. Washington, DC: Institute of Medicine. 2011. [Google Scholar]
- 20.Honigberg MC, Eshel N, Luskin MR, Shaykevich S, Lipsitz SR, Katz JT. Curricular time, patient exposure, and comfort caring for lesbian, gay, bisexual, and transgender patients among recent medical graduates. LGBT health. 2017;4(3):237–9. [DOI] [PubMed] [Google Scholar]
- 21.Gibson AW, Radix AE, Maingi S, Patel S. Cancer care in lesbian, gay, bisexual, transgender and queer populations. Future Oncol. 2017;13(15):1333–44. [DOI] [PubMed] [Google Scholar]
- 22.Institute of Medicine Committee on Quality of Health Care in A. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington (DC): National Academies Press (US) Copyright 2001 by the National Academy of Sciences. All rights reserved.; 2001. [Google Scholar]
- 23.Sprandio JD. Oncology patient-centered medical home. Journal of oncology practice. 2012;8(3 Suppl):47s–9s. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 24.Hulbert-Williams NJ, Plumpton C, Flowers P, McHugh R, Neal R, Semlyen J, et al. The cancer care experiences of gay, lesbian and bisexual patients: A secondary analysis of data from the UK Cancer Patient Experience Survey. European journal of cancer care. 2017;26(4). [DOI] [PubMed] [Google Scholar]
- 25.Jabson JM, Kamen CS. Sexual minority cancer survivors’ satisfaction with care. Journal of psychosocial oncology. 2016;34(1–2):28–38. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 26.Eliason MJ, Dibble SL. Provider-patient issues for the LGBT cancer patient. Cancer and the LGBT community: Springer; 2015. p. 187–202. [Google Scholar]
- 27.Hill G, Holborn C. Sexual minority experiences of cancer care: a systematic review. Journal of Cancer Policy. 2015;6:11–22. [Google Scholar]
- 28.Wheldon CW, Schabath MB, Hudson J, Bowman Curci M, Kanetsky PA, Vadaparampil ST, et al. Culturally Competent Care for Sexual and Gender Minority Patients at National Cancer Institute-Designated Comprehensive Cancer Centers. LGBT health. 2018;5(3):203–11. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 29.Boehmer U, Stokes JE, Bazzi AR, Winter M, Clark MA. Dyadic stress of breast cancer survivors and their caregivers: Are there differences by sexual orientation? Psycho-Oncology. 2018. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 30.Mravcak SA. Primary care for lesbians and bisexual women. American family physician. 2006;74(2):279–86. [PubMed] [Google Scholar]
- 31.McNair RP, Hegarty K. Guidelines for the Primary Care of Lesbian, Gay, and Bisexual People: A Systematic Review. Annals of Family Medicine. 2010;8(6):533–41. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 32.McNamara MC, Ng H. Best practices in LGBT care: A guide for primary care physicians. Cleve Clin J Med. 2016;83(7):531–41. [DOI] [PubMed] [Google Scholar]
- 33.Shetty G, Sanchez JA, Lancaster JM, Wilson LE, Quinn GP, Schabath MB. Oncology healthcare providers’ knowledge, attitudes, and practice behaviors regarding LGBT health. Patient education and counseling. 2016;99(10):1676–84. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 34.Apaydin KZ, Fontenot HB, Shtasel D, Dale SK, Borba CP, Lathan CS, et al. Facilitators of and barriers to HPV vaccination among sexual and gender minority patients at a Boston community health center. Vaccine. 2018;36(26):3868–75. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 35.Ceres M, Quinn GP, Loscalzo M, Rice D, editors. Cancer Screening Considerations and Cancer Screening Uptake for Lesbian, Gay, Bisexual, and Transgender Persons. Seminars in oncology nursing; 2018: Elsevier. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 36.Seay J, Ranck A, Weiss R, Salgado C, Fein L, Kobetz E. Understanding Transgender Men’s Experiences with and Preferences for Cervical Cancer Screening: A Rapid Assessment Survey. LGBT Health. 2017;4(4):304–9. [DOI] [PubMed] [Google Scholar]
- 37.McDowell M, Pardee DJ, Peitzmeier S, Reisner SL, Agenor M, Alizaga N, et al. Cervical Cancer Screening Preferences Among Trans-Masculine Individuals: Patient-Collected Human Papillomavirus Vaginal Swabs Versus Provider-Administered Pap Tests. LGBT Health. 2017;4(4):252–9. [DOI] [PubMed] [Google Scholar]
- 38.Wong EL, Chan PK, Chor JS, Cheung AW, Huang F, Wong SY. Evaluation of the impact of human papillomavirus DNA self-sampling on the uptake of cervical cancer screening. Cancer nursing. 2016;39(1):E1. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 39.LGBT Health Workforce Conference; 2017; New York City: Building the Next Generation of Academic Physicians. [Google Scholar]
- 40.Intersectionality in LGBT Communities: Gateways to New Understandings. 34th GLMA Annaul Conference on LGBT Health; St. Louis: Gay and Lesbian Medical Association; 2016. [Google Scholar]
- 41.Margioles L. In: Solder B, editor.: National LGBT Cancer Network; 2017. [Google Scholar]
- 42.Margolies L, Joo R, McDavid J. Best Practices in Creating and Delivering LGBTQ Cultural Competency Trainings for Health and Social Service Agencies. National LGBT Cancer Network. [Google Scholar]
- 43.Potter J, Peitzmeier S, Reisner S, Bernstein I. If You Have It, Check It: Overcoming Barriers to Cervical Cancer Screening with Patients on the Female-to-Male Transgender Spectrum. The National LGBT Health Education Center; 2014. [Google Scholar]
- 44.Potter J. Breast Cancer Risk and Prevention in Lesbian and Bisexual Women. November 19, 2014: National LGBT Health Education Center; 2017. [Google Scholar]
- 45.Boehmer U, Elk R. Cancer and the LGBT Community: Unique Perspectives from Risk to Survivorship: Springer International Publishing; 2015. [Google Scholar]
- 46.Kano M, Sawyer K, Willging C. Guidelines for Conducting Research WITH LGBTQ+ Individuals and Communities in New Mexico Albuquerque, NM: Community Engagement Core, University of New Mexico; 2016. [Available from: https://hsc.unm.edu/programs/nmcareshd/docs/LGBTQ-guidelines.pdf.
- 47.ACGME Core Competencies: Accreditation Council for Graduate Medical Education; 2007. [updated 5 July 2012. Available from: https://www.ecfmg.org/echo/acgme-core-competencies.html.
