Individual and institutional predictors of sexual orientation and gender identity data collection in oncology practice: An ASCO survey.

6520 Background: Most oncology practices do not collect patients’ sexual orientation (SO) or gender identity (GI) (SOGI), prohibiting assessment of sexual and gender minority (SGM) patients’ cancer disparities and identification of such patients in cancer care or research. Studies report that 90% of SGM patients would disclose their SOGI, while 78% of clinicians believe that patients would not. Preliminary evidence indicates that SOGI disclosure improves health outcomes. Organizations, including ASCO and NIH, have called for routine SOGI data collection, but institutional barriers, e.g. lack of SOGI fields in EMRs, hinder progress. This study aimed to delineate institutional and individual-level factors related to SOGI data collection in oncology. Methods: From Oct to Nov 2020, an anonymous 54 item online survey was distributed to ASCO members via direct outreach, listservs and social media. The survey assessed whether respondents’ institutions collect SOGI data, factors related to SOGI data collection, respondents’ attitudes about SOGI data and SGM patients, and demographics. Simple and multiple logistic regression modeling determined factors associated with respondents’ reports of SOGI data collection at their institutions. Results: Nearly half of 257 respondents reported their institutions collect SO and GI data (42%, 48%, respectively); over a third reported their institutions did not collect SO or GI data (36%, 34%, respectively); and a fifth were unsure (22%, 18%, respectively). Collection of both SO and GI was associated in unadjusted models with leadership support and having resources for SOGI data collection. SO collection was also associated with type of institution, having an SGM family member, and belief that knowing SO is important for providing quality care. GI collection was associated with the respondent’s role, SO, political leaning, past SGM training, and belief that knowing GI is important for providing care. Odds ratios (OR) from adjusted models with 95% confidence intervals (CI) comparing respondents who reported SO or GI collection as “Yes” vs. “No” are reported (comparisons to “Unsure” not presented). Most respondents (79%) felt it was important to know both SO and GI to provide quality care, while 14% felt neither was important. Conclusions: Whether or not institutions collect SOGI data is related to many factors. Despite limited statistical power, the same three factors emerged as drivers of data collection: leadership support, resources and individuals’ attitudes. These are critical and possibly self-reinforcing elements for collecting SOGI data.[Table: see text]

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Sexual Orientation and Gender Identity Data Collection Update: U.S. Government Takes Steps to Promote Sexual Orientation and Gender Identity Data Collection Through Meaningful Use Guidelines

LGBT Health ◽

10.1089/lgbt.2014.0033 ◽

2014 ◽

Vol 1 (3) ◽

pp. 157-160 ◽

Cited By ~ 25

Author(s):

Sean Cahill ◽

Harvey J. Makadon

Keyword(s):

Sexual Orientation ◽

Data Collection ◽

Gender Identity ◽

Meaningful Use ◽

And Gender

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Sexual Orientation and Gender Identity Data Collection in Clinical Settings and in Electronic Health Records: A Key to Ending LGBT Health Disparities

LGBT Health ◽

10.1089/lgbt.2013.0001 ◽

2014 ◽

Vol 1 (1) ◽

pp. 34-41 ◽

Cited By ~ 111

Author(s):

Sean Cahill ◽

Harvey Makadon

Keyword(s):

Health Disparities ◽

Sexual Orientation ◽

Data Collection ◽

Gender Identity ◽

Electronic Health Records ◽

Clinical Settings ◽

Lgbt Health ◽

Health Records ◽

Electronic Health ◽

And Gender

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Collection of Data on Sex, Sexual Orientation, and Gender Identity by U.S. Public Health Data and Monitoring Systems, 2015–2018

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph182212189 ◽

2021 ◽

Vol 18 (22) ◽

pp. 12189

Author(s):

Alissa C. Kress ◽

Asia Asberry ◽

Julio Dicent Taillepierre ◽

Michelle M. Johns ◽

Pattie Tucker ◽

...

Keyword(s):

Public Health ◽

Sexual Orientation ◽

Data Collection ◽

Gender Identity ◽

Health Data ◽

Monitoring Systems ◽

Data Systems ◽

Public Health Data ◽

Race Ethnicity ◽

And Gender

We aimed to assess Centers for Disease Control and Prevention (CDC) data systems on the extent of data collection on sex, sexual orientation, and gender identity as well as on age and race/ethnicity. Between March and September 2019, we searched 11 federal websites to identify CDC-supported or -led U.S. data systems active between 2015 and 2018. We searched the systems’ website, documentation, and publications for evidence of data collection on sex, sexual orientation, gender identity, age, and race/ethnicity. We categorized each system by type (disease notification, periodic prevalence survey, registry/vital record, or multiple sources). We provide descriptive statistics of characteristics of the identified systems. Most (94.1%) systems we assessed collected data on sex. All systems collected data on age, and approximately 80% collected data on race/ethnicity. Only 17.7% collected data on sexual orientation and 5.9% on gender identity. Periodic prevalence surveys were the most common system type for collecting all the variables we assessed. While most U.S. public health data and monitoring systems collect data disaggregated by sex, age, and race/ethnicity, far fewer do so for sexual orientation or gender identity. Standards and examples exist to aid efforts to collect and report these vitally important data. Additionally important is increasing accessibility and appropriately tailored dissemination of reports of these data to public health professionals and other collaborators.

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Barriers and facilitators to sexual orientation and gender identity (SOGI) data collection.

Journal of Clinical Oncology ◽

10.1200/jco.2021.39.15_suppl.e18520 ◽

2021 ◽

Vol 39 (15_suppl) ◽

pp. e18520-e18520

Author(s):

Gwendolyn P. Quinn ◽

Mandi L. Pratt-Chapman ◽

Steve C. Meersman ◽

Shine Chang ◽

Charles Stewart Kamen ◽

...

Keyword(s):

Sexual Orientation ◽

Data Collection ◽

Gender Identity ◽

Culture Change ◽

Clinical Care ◽

Barriers And Facilitators ◽

Cultural Barriers ◽

Cultural Humility ◽

Specific Feedback ◽

And Gender

e18520 Background: Lack of sexual orientation and gender identity (SOGI) data collection is a barrier to inclusion of sexual and gender minority (SGM) patients in oncology. ASCO, NIH, and other groups have called for collection of SOGI data and documentation of SGM health disparities as a priority for clinical care and research. However, SOGI data are not routinely collected in most cancer care settings. The purpose of this study was to examine perceived barriers and facilitators to SOGI data collection among oncology professionals and researchers. Methods: An anonymous 54-item web-based survey was distributed to ASCO members which included two opened-ended items on barriers and facilitators to SOGI data collection. The survey was also promoted on listservs (Association of Community Cancer Centers, Association of Oncology Social Workers) and social media (e.g., Twitter, LinkedIn, Facebook professional groups). Responses to the open–ended items (n = 152) were coded by three coders using content analysis and constant comparison methods. Inter-rater reliability was 0.95. Results: The majority of respondents noted individual and organizational barriers to collecting SOGI data, including Culture (no support, expressed value or awareness of need from institution); Electronic Health Record (no location for SOGI or workflow challenges); Provider Discomfort (lack of knowledge on how/why to collect SOGI data, concerns about expressed bias); Patient Discomfort (privacy concerns, mistrust, refusal); Lack of Training or Resources; and Time (insufficient time to collect). Facilitators included a need for Protocols (intake process, patient-initiated disclosure); Training (how to collect and what to do with data); Culture change (institutional and/or provider priority); and improving Community Trust (patient trust, particularly in conservative areas of the country). A few respondents were concerned about patient safety in disclosure and some respondents noted culture change would require more representation of SGM staff and “safe spaces” in oncology settings. Three respondents made negatively biased comments about SGM patients. Conclusions: Overall, specific feedback from oncology providers identified barriers to SOGI data collection and suggested facilitators to resolve them, although not all respondents expressed value for SOGI data collection. Conservative culture and lack of leadership prioritization were cultural barriers; culture change (organizational and social) was noted as a potential facilitator for SOGI data collection. While workflow challenges and lack of a place to document SOGI in the EHR were barriers, protocols for documentation and patient-led disclosure were suggested facilitators. The study supports the need for leadership, processes, structured data fields, implicit bias and cultural humility training, and reduction of stigma to respond to the ASCO and NIH call to action.

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City-Level Structural Stigma and Patient Sexual Orientation and Gender Identity Data Collection at US Health Centers, 2018

American Journal of Public Health ◽

10.2105/ajph.2021.306414 ◽

2021 ◽

pp. e1-e5

Author(s):

Anthony N. Almazan ◽

Dana King ◽

Chris Grasso ◽

Sean Cahill ◽

Micah Lattanner ◽

...

Keyword(s):

Sexual Orientation ◽

Data Collection ◽

Gender Identity ◽

Health Centers ◽

Orientation Data ◽

Gender Minority ◽

Patient Demographics ◽

Sexual And Gender Minority ◽

And Gender ◽

The Relationship

Objectives. To examine the relationship between city-level structural stigma pertaining to sexual orientation and gender identity (SOGI) and completeness of patient SOGI data collection at US federally qualified health centers (FQHCs). Methods. We used the Human Rights Campaign’s Municipal Equality Index to quantify city-level structural stigma against sexual and gender minority people in 506 US cities across 49 states. We ascertained the completeness of SOGI data collection at FQHCs from the 2018 Uniform Data System, which describes FQHC patient demographics and service utilization. We included FQHCs in cities captured by the structural stigma index in multinomial generalized linear mixed models to examine the relationship between city-level structural stigma and SOGI data completeness. Results. FQHCs in cities with more protective sexual orientation nondiscrimination policies reported more complete patient sexual orientation data (adjusted odds ratio [AOR] = 1.6; 95% confidence interval [CI] = 1.2, 2.1). This association was also found for gender identity nondiscrimination policies and gender identity data collection (AOR = 1.7; 95% CI = 1.3, 2.2). Conclusions. Municipal sexual and gender minority nondiscrimination laws are associated with social and municipal environments that facilitate patient SOGI data collection. (Am J Public Health. Published online ahead of print September 9, 2021:e1–e5. https://doi.org/10.2105/AJPH.2021.306414 )

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If They Don't Count Us, We Don't Count: Trump Administration Rolls Back Sexual Orientation and Gender Identity Data Collection

LGBT Health ◽

10.1089/lgbt.2017.0073 ◽

2017 ◽

Vol 4 (3) ◽

pp. 171-173 ◽

Cited By ~ 35

Author(s):

Sean R. Cahill ◽

Harvey J. Makadon

Keyword(s):

Sexual Orientation ◽

Data Collection ◽

Gender Identity ◽

And Gender ◽

Trump Administration

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Planning and implementing sexual orientation and gender identity data collection in electronic health records

Journal of the American Medical Informatics Association ◽

10.1093/jamia/ocy137 ◽

2018 ◽

Vol 26 (1) ◽

pp. 66-70 ◽

Cited By ~ 24

Author(s):

Chris Grasso ◽

Michal J McDowell ◽

Hilary Goldhammer ◽

Alex S Keuroghlian

Keyword(s):

Health Care ◽

Sexual Orientation ◽

Data Collection ◽

Gender Identity ◽

Electronic Health Records ◽

Current Evidence ◽

Institute Of Medicine ◽

Health Records ◽

Electronic Health ◽

And Gender

AbstractLesbian, gay, bisexual, transgender, and queer (LGBTQ) people experience significant health disparities across the life course and require health care that addresses their unique needs. Collecting information on the sexual orientation and gender identity (SO/GI) of patients and entering SO/GI data in electronic health records has been recommended by the Institute of Medicine, the Joint Commission, and the Health Resources and Services Administration as fundamental to improving access to and quality of care for LGBTQ people. Most healthcare organizations, however, have yet to implement a system to collect SO/GI data due to multiple barriers. This report addresses those concerns by presenting recommendations for planning and implementing high-quality SO/GI data collection in primary care and other health care practices based on current evidence and best practices developed by a federally qualified health center and leader in LGBTQ health care.

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