Researchers call this problem invisibility in data. Invisibility means your stories and numbers fail to show up in the charts, graphs, and papers which guide cancer care. Many LGBTQ people with cancer feel this silence in clinics and hospitals. Research teams also see large gaps when they look for strong data about your communities. 1
Let’s explain how invisibility in data works, why this harms LGBTQ people with cancer, and what steps offer hope. You will see findings from studies in the spreadsheets you shared, plus newer research from cancer centers and national groups. 14
What does “invisibility in data” mean
Health systems collect many numbers. Tumor size. Stage. Lab results. Age. Zip code. These numbers flow into medical charts, cancer registries, and research studies. Policies and guidelines grow from these data sets.
For most of cancer history, sexual orientation and gender identity stayed out of these systems. Forms did not ask if someone is gay, lesbian, bi, trans, nonbinary, queer, or intersex. Names and pronouns were forced into boxes which fit straight and cisgender people only. 3
Without questions about sexual orientation and gender identity, health records hide large parts of your life. Any research based on those records also hides your experiences. Experts from national cancer groups have warned that this leads to serious gaps in what science knows about LGBTQ cancer risk, screening, treatment, and life after treatment. 3
Where invisibility shows up
Several studies in your spreadsheets and newer work in major journals describe the same pattern. LGBTQ people face higher cancer risks and worse outcomes in some areas, but data sets rarely show clear numbers. 3
Here are main places where invisibility appears.
Registry data
National cancer registries track who gets cancer, which treatments they receive, and who survives. At this time, large United States cancer registries still do not include sexual orientation or gender identity fields. 2
One review from the National Cancer Institute explains this problem in direct terms. The authors state there is limited research on sexual and gender minority populations and cancer, largely because cancer registries do not collect sexual orientation and gender identity information. 2 Without these basic fields, no one has a clear count of how many LGBTQ people receive a given diagnosis, which groups face higher death rates, or where services fall short.
Electronic medical records
Many cancer centers have started to add sexual orientation and gender identity questions into electronic medical records. A study in JNCI Monographs looked at one health system and reviewed how often staff filled in these new fields for patients in a tumor registry. Only about twelve percent of patients had complete sexual orientation and gender identity data, even after several years of work. 7
Another study in a cancer care setting found which staff often felt unsure about asking sexual orientation and gender identity questions, and systems did not support easy data entry. In that survey, fewer than half of oncology practices reported routine sexual orientation or gender identity collection, even though most clinicians agreed this information supports better care. 8
Clinical trials and research studies
Cancer trials guide treatment guidelines. Yet sexual and gender minority people rarely appear in those trials in clear ways. A 2023 article in the Journal of Clinical Oncology focused on this problem and used the phrase “sexual and gender minority invisibility in cancer studies.” 1
That team reviewed ongoing and past cancer studies and reached three main points. First, many trials never ask about sexual orientation or gender identity, so sexual and gender minority participants stay hidden inside larger groups. Second, trials which ask these questions often enroll only small numbers of LGBTQ participants, due to weak outreach and fear of discrimination. Third, even when data exist, researchers often fail to analyze or report results by sexual orientation or gender identity. 1
Reviews of cancer care for sexual and gender minority patients show similar gaps. A scoping review of cancer care delivery for these communities found only a small number of studies worldwide, most with small samples and limited methods. 4 Another scoping review of health outcomes after cancer among sexual and gender minorities found serious gaps in knowledge about survival, treatment side effects, mental health, and quality of life. 5
Population surveys
Some large health surveys now ask questions about sexual orientation and, less often, gender identity. Studies using these data show clear cancer screening gaps and health information barriers among lesbian, gay, bi, and trans adults. 9 Yet these surveys often include only small numbers of trans people, people of color, or intersex people. Many countries do not include any LGBTQ questions in national surveys.
So even when surveys move ahead, coverage stays thin. Voices from Black, Indigenous, and other people of color within LGBTQ communities often drop out of the picture. 1
How invisibility harms you and your community
Invisibility in data does not stay inside spreadsheets. Real harms follow. Studies in your files show at least four kinds of harm.
Missed risks and late diagnoses
Some LGBTQ groups face higher risks for certain cancers due to smoking, alcohol use, HPV, or hormone exposures. 2 Without strong data, guidelines for screening and risk reduction rarely speak directly to lesbian, gay, bi, trans, or intersex people. Many patients never hear clear messages which link their identities and cancer risk in respectful ways.
When registries and surveys fail to capture who is LGBTQ, researchers have no way to see where cancers show up earlier, later, or more often. This leads to late diagnoses and late policy change. 2
Unequal quality of care
Reviews of LGBTQ cancer care describe frequent reports of stigma, misgendering, and providers who lack basic knowledge about same sex partners, fertility, or body changes after hormone treatment. 311 When sexual orientation and gender identity fields stay blank in charts, staff training and quality programs have no easy way to track whether care improves for LGBTQ patients.
One scoping review on care delivery for sexual and gender minority patients found which most studies came from a small group of cancer centers with strong interest in equity. Many other centers had no published data on LGBTQ patient experiences at all. 4 This silence does not mean care feels safe. Silence often signals an absence of tracking and accountability.
Underrepresentation in evidence based guidelines
Guidelines gain strength when they draw from large, diverse trials. When LGBTQ people appear rarely or invisibly in those trials, guidelines lean on data from heterosexual and cisgender groups. A review on breast cancer in sexual and gender minority populations stressed which poor collection of sexual orientation and gender identity makes these patients invisible in electronic records and national databases. [12] As a result, oncologists have little evidence on which treatments work best for trans women on estrogen, or for gay men dealing with anal cancer risk.
These gaps extend to survivorship issues. A review of health outcomes after cancer among sexual and gender minorities reported major holes in knowledge about long term side effects, second cancers, and chronic health problems in these communities. 5
Emotional harm and sense of erasure
Quantitative data gaps connect with lived experience. A qualitative study titled “Awkward choreographies from cancer’s margins” explored stories from sexual and gender minority people with breast or gynecologic cancer. Participants described constant work to manage possible discrimination and the risk of “institutional erasure” during treatment. [13]
Many LGBTQ patients report intake forms with no place for correct gender, partners who get misnamed, and staff who skip questions about sexual health altogether. 311 When research and records overlook entire parts of someone’s identity, many patients feel invisible, unsafe, and less likely to share important information.
Why does invisibility in data happen
Studies in your spreadsheets highlight several reasons.
Historical stigma and structural bias
For decades, many health systems treated LGBTQ lives as private, shameful, or irrelevant to medical care. Laws and policies punished same sex relationships and trans expression in many regions. That history shaped cancer research. Early studies rarely mentioned sexual orientation or gender identity, or framed LGBTQ status only as a risk factor for HIV. 3
Scholars who study social determinants of LGBT cancer inequities point to structural stigma, discrimination in health insurance and employment, and lack of legal protections as root causes of both health gaps and data gaps. 3 When systems treat LGBTQ health as low priority, research funding, data standards, and training also lag.
Measurement challenges and fear of misuse
Researchers sometimes worry about how to ask questions about sexual orientation and gender identity in safe and respectful ways. Some fear loss of response or technical challenges when adding these fields to cancer registries. 18
Community members share strong concerns as well. A number of patients fear sharing sexual orientation or gender identity, due to risk of bias or harm. 10[13] In many surveys and clinics, trust remains low, especially among trans people and LGBTQ people of color who have faced racism, transphobia, and homophobia in health care settings.
Yet studies of sexual orientation and gender identity data collection in community health centers show high acceptance from patients when staff explain why questions matter and when forms feel inclusive. 10
Weak incentives and lack of standards
Only in recent years have major oncology groups and government offices framed sexual and gender minority status as essential parts of cancer equity. A position statement from the American Society of Clinical Oncology called for inclusion of sexual and gender minority status in cancer registries and clinical trials. 6 Progress since then has been slow.
Recent surveys of oncology practices show regional gaps. Community oncology programs in the southern United States report the lowest rates of routine sexual orientation and gender identity collection. Practices with dedicated minority outreach staff show higher collection rates. 8 Without clear national standards and strong incentives, many centers see data collection as optional work instead of a core equity task.
Paths toward visibility
Although problems remain large, research in recent years points toward concrete steps.
Routine sexual orientation and gender identity data collection
Multiple studies recommend simple, standardized questions about sexual orientation, gender identity, and sex assigned at birth in every cancer clinic. 17 These questions belong on registration forms, in electronic medical records, and in cancer registries.
Research teams describe several keys to success. Staff need brief, practical training on why these questions matter and how to respond when patients share identities or histories outside their own experience. Systems need clear options for both identity and pronouns. Patients need assurance which sexual orientation and gender identity data stay private and support better care. 710
Inclusive recruitment and reporting in cancer studies
Authors of the JCO article on sexual and gender minority invisibility argue for specific recruitment methods for LGBTQ patients. Suggestions include strong partnerships with LGBTQ community groups, tailored outreach through trusted networks, and study materials which clearly signal welcome for queer and trans people. 1
Research teams also need to report sexual orientation and gender identity whenever data exist. That includes stating when no LGBTQ participants joined a study. Honest reporting helps show where future work needs stronger outreach.
Community driven research and partnership
Several articles in your spreadsheets stress the value of community voices in study design. Projects like Cancer’s Margins brought sexual and gender minority patients together with researchers to explore how identity, knowledge, and care intersect. [13] Surveys of LGBTQ cancer survivors have guided new tools, such as targeted communication skills training for clinicians and inclusive survivorship programs. 5
Partnerships with groups led by LGBTQ people with cancer, including those focused on Black and Brown communities, help keep research grounded in daily life. Voices from these groups push researchers to ask better questions and to share results in ways which support real change.
What this means for you
As a person with cancer who is lesbian, gay, bi, trans, queer, or intersex, invisibility in data might feel like one more burden on top of diagnosis and treatment. You deserve care based on evidence which reflects your body, your relationships, and your life.
When someone offers a form with sexual orientation and gender identity questions, that moment might feel strange or even risky. Still, those answers help build the numbers which show LGBTQ people exist in every part of the cancer world. Each response supports future guidelines, training, and services which treat your community with respect.
You also have the right to ask your care team questions about data. You are able to ask whether the cancer center tracks sexual orientation and gender identity. You are able to ask whether research studies at that center include LGBTQ participants or report results by identity. Those questions send a clear message which visibility matters.
Researchers, clinicians, and patient advocates are working hard to move from invisibility toward full inclusion. Studies in your spreadsheets, together with recent policy statements and new data projects, show both the size of the problem and the strength of current efforts. [13]
Your story and your numbers belong in cancer science. When LGBTQ people stand present in data, better care and fairer outcomes move closer for everyone in your community.
References
1 Rosser BRS, Weideman BCD, Mitteldorf D, Rider GN, et al. Sexual and gender minority invisibility in cancer studies, A call for effective recruitment methods to address cancer disparities. Journal of Clinical Oncology. 2023,41(33),5093-5098. doi:10.1200/JCO.23.00655. [Based on JCO commentary on recruitment and invisibility.] (PubMed)
2 Jackson SS, Patel S, Parker K. Cancer disparities among sexual and gender minority populations. Journal of the National Medical Association. 2023,115(2S),S32-S37. [Reviews cancer risk and emphasizes lack of sexual orientation and gender identity data in national registries.] (PMC)
3 Matthews AK, Breen E, Kittiteerasack P, et al. Social determinants of LGBT cancer health inequities. Seminars in Oncology Nursing. 2018,34(1),12-20. [Links structural stigma, social disadvantage, and data gaps to cancer inequities.] (PubMed)
4 Kent EE, Wheldon CW, Smith AW, Srinivasan S, Geiger AM. Care delivery, patient experiences, and health outcomes among sexual and gender minority patients with cancer and survivors, A scoping review. Cancer. 2019,125(24),4371-4379. [Summarizes limited global literature on sexual and gender minority cancer care and highlights major evidence gaps.] (PubMed)
5 Pratt-Chapman ML, Rodriguez-Diaz CE, Vermund SH, et al. Health outcomes of sexual and gender minorities after cancer, A scoping review. Systematic Reviews. 2021,10,317. [Reviews evidence on outcomes after cancer and notes serious gaps in data for sexual and gender minorities.] (BioMed Central)
6 Griggs J, Maingi S, Blinder V, et al. American Society of Clinical Oncology position statement, Strategies for reducing cancer health disparities among sexual and gender minority populations. Journal of Clinical Oncology. 2017,35(19),2203-2208. [Calls for inclusion of sexual and gender minority status in registries, clinical trials, and quality programs.] (ASCO Publications)
7 Tipre M, Winters S, Kearns A, et al. Integration of sexual orientation and gender identity data into a comprehensive cancer center tumor registry, Challenges and lessons learned. JNCI Monographs. 2025,2025(69),147-157. [Reports low completion of sexual orientation and gender identity fields in a tumor registry and describes system level barriers.] (OUP Academic)
8 Heffner J, et al. Sexual orientation and gender identity data collection in oncology practice, Findings of an ASCO survey. JCO Oncology Practice. 2022,18(8),e1297-e1305. [Shows how fewer than half of surveyed oncology practices routinely collect sexual orientation or gender identity data and describes barriers.] (ResearchGate)
9 Charkhchi P, Carlos RC, Chawla N, et al. Modifiers of cancer screening prevention among sexual and gender minorities in the Behavioral Risk Factor Surveillance System. Journal of the American College of Radiology. 2019,16(4B),607-620. [Uses national survey data to describe screening patterns and demonstrates both progress and continuing data gaps for sexual and gender minorities.] (JACR)
10 Cahill S, Singal R, Grasso C, et al. Do ask, do tell, High levels of acceptability by patients of routine collection of sexual orientation and gender identity data in four diverse American community health centers. PLOS ONE. 2014,9(9),e107104. [Shows strong patient support for routine sexual orientation and gender identity questions when staff explain purpose and privacy.] (ResearchGate)
11 Brown MT, McElroy JA. Experiences and unmet needs of lesbian, gay, and bisexual people with cancer care, A systematic review and meta synthesis. Psycho-Oncology. 2018,27(2),356-364. [Synthesizes qualitative studies highlighting stigma, invisibility, and unmet information needs in cancer care.] (PubMed)
[12] Warwar S, Beach LB, Jordan SW. Breast cancer disparities among sexual and gender minority populations. Translational Cancer Research. 2023,12(8),2219-2223. [Discusses underrepresentation of sexual and gender minority patients in breast cancer research and links this to poor sexual orientation and gender identity data collection.] (Translational Cancer Research)
[13] Bryson MK, Taylor ET, Boschman L, et al. Awkward choreographies from cancer’s margins, Incommensurabilities of biographical and biomedical knowledge in sexual and or gender minority cancer patients’ treatment. Journal of Medical Humanities. 2020,41(3),341-361. [Presents qualitative interviews with sexual and gender minority patients and describes experiences of institutional erasure and safety work during cancer care.] (PubMed)