Data and Privacy: Tools and Resources for LGBTQIA+ Inclusion by Design

Presented on: June 11, 2024

The MRCT Center added two new tools to the LGBTQIA+ Inclusion by Design in Clinical Research Toolkit: the SOGI Data Collection Checklist and the SOGI Data Privacy Checklist.

During this webinar we discussed:

• The critical role of representation in clinical research, particularly for LGBTQIA+ communities, and an overview of the foundations supporting the LGBTQIA+ Inclusion by Design in Clinical Research Toolkit.
• Essential considerations for collecting SOGI data, covering survey and form design, appropriate language in study materials, and the protocols for collecting, storing, and sharing SOGI data.
• Practical implementation examples and areas that require further research and guidance.

Related Resources

MRCT Center Resources

• MRCT Center DEI Main page: https://mrctcenter.org/diversity-in-clinical-research/
• MRCT Center. (2020). Diversity, Inclusion, and Equity Guidance Document: https://mrctcenter.org/diversity-in-clinical-research/guidance/guidance-document/
• MRCT Center. (2020). Diversity, Inclusion, and Equity Guidance Toolkit and User Guide: https://mrctcenter.org/diversity-in-clinical-research/tools/toolkit/
• MRCT Center. Equity by Design in Clinical Research Metrics Framework: https://mrctcenter.org/diversity-in-clinical-research/tools/ebd-metrics-framework-and-user-guide/
• Diversity Convergence Project. (2024). Toward a National Action Plan for Achieving Diversity in Clinical Trials: https://mrctcenter.org/resource/toward-a-national-action-plan-for-achieving-diversity-in-clinical-trials/
• MRCT Center. (2024). Research Ethics Action Collaborative for HRPPs: https://mrctcenter.org/resource/reach-advancing-dei-in-human-participant-research/ 
• MRCT Center. (2023). Accessibility by Design in Clinical Research Toolkit: https://mrctcenter.org/diversity-in-clinical-research/tools/abd_toolkit/
• Equitable Access to Clinical Trials Project (EACT): https://www.eactproject.org/
• MRCT Center. (2024). LGBTQIA+ Inclusion by Design in Clinical Research Toolkit: https://mrctcenter.org/lgbtqia-inclusion/

Other Resources – by slide:

(slide 19)

• The White House. (2023). Federal Evidence Agenda on LGBTQI+ Equity: https://www.whitehouse.gov/wp-content/uploads/2023/01/Federal-Evidence-Agenda-on-LGBTQI-Equity.pdf

(slide 24)

• Federal Committee on Statistical Methodology (FCSM) Sexual Orientation, Gender Identity, and Sex Characteristics Subcommittee: https://www.fcsm.gov/groups/sogisc/
• FCSM. (2021). Why Do Federal Agencies Ask About Sexual Orientation and Gender Identity (SOGI) on Surveys? https://apps.bea.gov/icsp/fcsm/assets/docs/FCSM%2021%2001%20062221.pdf
• FCSM. (2020). Updates of Terminology of Sexual Orientation and Gender Identity Survey Measures: https://apps.bea.gov/icsp/fcsm/assets/docs/FCSM_SOGI_Terminology_FY20_Report_FINAL.pdf  
• Federal Interagency Working Group on Improving Measurement of Sexual Orientation and Gender Identity in Federal Surveys. (2016). Current Measures of Sexual Orientation and Gender Identity in Federal Surveys: https://dpcpsi.nih.gov/sites/default/files/WorkingGroupPaper1_CurrentMeasures_08-16_508.pdf
• Federal Interagency Working Group on Improving Measurement of Sexual Orientation and Gender Identity in Federal Surveys. (2016). Evaluations of Sexual Orientation and Gender Identity Survey Measures: What Have We Learned? https://dpcpsi.nih.gov/sites/default/files/Evaluations_of_SOGI_Questions_20160923_508.pdf
• Federal Interagency Working Group on Improving Measurement of Sexual Orientation and Gender Identity in Federal Surveys (2016). Toward a Research Agenda for Measuring Sexual Orientation and Gender Identity in Federal Surveys: Findings, Recommendations, and Next Steps: https://dpcpsi.nih.gov/sites/default/files/SOGI_Research_Agenda_Final_Report_20161020_508.pdf
• Executive Office of the President of the United States. (2023). Federal Evidence Agenda on Lesbian, Gay, Bisexual, Transgender, Queer, and Intersex (LGBTQI+) Equity (Factsheet): https://www.whitehouse.gov/wp-content/uploads/2023/01/Federal-Evidence-Agenda-on-LGBTQI-Equity.pdf
• The White House. (2023). Recommendations on the Best Practices for the Collection of Sexual Orientation and Gender Identity Data on Federal Statistical Surveys: https://www.whitehouse.gov/wp-content/uploads/2023/01/SOGI-Best-Practices.pdf
• National Academies of Science, Engineering, and Medicine (NASEM). (2022). Measuring Sex, Gender Identity, and Sexual Orientation: https://nap.nationalacademies.org/catalog/26424/measuring-sex-gender-identity-and-sexual-orientation
• Department of Health and Human Services (HHS). (2023). HHS SOGI Data Action Plan: https://www.hhs.gov/sites/default/files/hhs-sogi-data-action-plan.pdf
• National Institutes of Health (NIH) Sexual & Gender Minority Research Office: https://dpcpsi.nih.gov/sgmro  
• HHS. Healthy People 2030: https://health.gov/healthypeople  
• United States Census Bureau. (2021). SOGI on the Census Bureau’s Household Pulse Survey: https://www.census.gov/newsroom/press-releases/2021/household-pulse-phase-3-2-aug11.html?utm_medium=email&utm_source=govdelivery
• NIH Sexual & Gender Minority Research Office: https://dpcpsi.nih.gov/sgmro
• Sign up for the NIH SGM Listserv: https://tinyurl.com/NIHSGMLIST
• Sign up for the SGM Health SIG Listserv: https://tinyurl.com/SGMGROUP

(slide 40)

• National LGBTQIA+ Health Education Center, A Program of the Fenway Institute. SO/GI Data Collection Demonstration Videos: https://www.lgbtqiahealtheducation.org/courses/so-gi-data-collection-training/
• National LGBTQIA+ Health Education Center, A Program of the Fenway Institute. Collecting Sexual Orientation and Gender Identity Data: https://www.lgbtqiahealtheducation.org/resources/in/collecting-sexual-orientation-and-gender-identity-data/
• National LGBTQIA+ Health Education Center, A Program of the Fenway Institute. Guidelines and Tips for Collecting Patient Data on Sexual Orientation and Gender Identity. https://www.lgbtqiahealtheducation.org/publication/ready-set-go-a-guide-for-collecting-data-on-sexual-orientation-and-gender-identity-2022-update/
• National LGBTQIA+ Health Education Center, A Program of the Fenway Institute. SOGI Patient Handout with FAQs: https://www.lgbtqiahealtheducation.org/publication/sexual-orientation-and-gender-identity-questions-information-for-patients/

(slide 44)

• Hafeez H et al. Health Care Disparities Among Lesbian, Gay, Bisexual, and Transgender Youth: A Literature Review. Cureus. 2017;9:e1184. Accessed August 7, 2023. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5478215/
• Quinn GP et al. Cancer and lesbian, gay, bisexual, transgender/transsexual, and queer/questioning (LGBTQ) populations. CA Cancer J Clin. 2015:65:384-400. Accessed August 7, 2023. https://acsjournals.onlinelibrary.wiley.com/doi/full/10.3322/caac.21288
• Obedin-Maliver J et al. Lesbian, Gay, Bisexual, and Transgender–Related Content in Undergraduate Medical Education. JAMA. 2011;306:971-977. Accessed August 7, 2023. https://jamanetwork.com/journals/jama/fullarticle/1104294 
• Jackson SS et al. Analysis of Mortality Among Transgender and Gender Diverse Adults in England. JAMA Netw Open. 2023;6(1):e2253687. Accessed August 28, 2023. https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2800814
• NIH. Notice of special interest. Administrative supplements for research on sexual and gender minority (SGM) populations. Accessed August 7, 2023. https://grants.nih.gov/grants/guide/notice-files/NOT-OD-22-032.html
• Institute of Medicine (US) Committee on Lesbian, Gay, Bisexual, and Transgender Health Issues and Research Gaps and Opportunities. (2011). The health of lesbian, gay, bisexual, and transgender people. National Academies Press (US). Accessed August 7, 2023. https://www.ncbi.nlm.nih.gov/books/NBK64806/ 
• Alper J et al. Institute of Medicine of the National Academies. (2013). Collecting sexual orientation and gender identity data in electronic health records. Accessed August 7, 2023. https://www.ncbi.nlm.nih.gov/books/NBK132859/pdf/Bookshelf_NBK132859.pdf
• Lunn MR et al. A digital health research platform for community engagement, recruitment, and retention of sexual and gender minority adults in a national longitudinal cohort study–—The PRIDE Study. J Am Med Inform Assoc. 2019;26:737-748. Accessed August 7, 2023. https://academic.oup.com/jamia/article-abstract/26/8-9/737/5509461?redirectedFrom=fulltext&login=true
• All of Us Research Program. Accessed August 7, 2023. https://allofus.nih.gov/news-events/announcements/research-roundup-research-pride-lgbtqia-representation-all-us
• Landers SJ et al. Sexual Orientation Differences in Asthma Correlates in a Population-Based Sample of Adults. Am J Public Health. 2011:101:2233-2244. Accessed August 7, 2023. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3222437/
• National Alliance on Mental Illness. Accessed August 7, 2023. https://www.nami.org/Your-Journey/Identity-and-Cultural-Dimensions/LGBTQ
• Kates J et al. Updated May 2018. Accessed August 7, 2023. http://files.kff.org/attachment/Issue-Brief-Health-and-Access-to-Care-and-Coverage-for-LGBT-Individuals-in-the-US
• Fredriksen-Goldsen KI et al. Health and Access to Care and Coverage for Lesbian, Gay, Bisexual, and Transgender Individuals in the U.S. Am J Public Health. 2017:107:1332-1338. Accessed August 7, 2023. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5508186/
• Hughes LD et al. Differences in All-Cause Mortality Among Transgender and Non-Transgender People Enrolled in Private Insurance. Demography. 2022;59:1023-1043. Accessed August 30, 2023. https://doi.org/10.1215/00703370-9942002
• Morris M et al. Training to reduce LGBTQ-related bias among medical, nursing, and dental students and providers: a systematic review.  BMC Medical Education. 2019;19:325. Accessed August 30, 2023. https://doi.org/10.1186/s12909-019-1727-3
• Trevor Project. Bullying and Suicide Risk among LGBTQ Youth. Accessed Aug 30, 2023. https://www.thetrevorproject.org/research-briefs/bullying-and-suicide-risk-among-lgbtq-youth/

(slide 45)

• Houghton A. (2018). Maintaining Dignity: A Survey of LGBT Adults Age 45 and Older. AARP Research.  Accessed Aug 29, 2023. https://www.aarp.org/research/topics/life/info-2018/maintaining-dignity-lgbt.html
• Dahlhamer JM et al.  Barriers to Health Care Among Adults Identifying as Sexual Minorities: A US National Study. Am J Public Health. 2016;106:1116. Accessed August 29, 2023. https://doi.org/10.2105/AJPH.2016.303049
• Sterling J et al. Cancer screening in the transgender population: a review of current guidelines, best practices, and a proposed care mode. Transl Androl Urol. 2020;9(6):2771-2785. Accessed August 7, 2023. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7807311/
• American Medical Association. Organizational Strategic Plan to Embed Racial Justice and Advance Health Equity 2021-2023. Accessed August 7, 2023. https://www.ama-assn.org/system/files/ama-equity-strategic-plan.pdf
• European Commission. How is data on my religious beliefs/sexual orientation/health/political views protected? Accessed August 7, 2023. https://commission.europa.eu/law/law-topic/data-protection/reform/rights-citizens/how-my-personal-data-protected/how-data-my-religious-beliefssexual-orientationhealthpolitical-views-protected_en
• Cahill S 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:e107104. Accessed August 7, 2023. https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0107104
• Daniel H et al. Lesbian, Gay, Bisexual, and Transgender Health Disparities: Executive Summary of a Policy Position Paper From the American College of Physicians. Ann Intern Med. 2015;163:135-137. Accessed August 7, 2023. https://doi.org/10.7326/M14-2482
• Pérez-Stable EJ. (2016). Director’s Message: Sexual and Gender Minorities Formally Designated as a Population Experiencing Health Disparities for Research Purposes. National Institutes of Health. Accessed August 7, 2023. https://www.nimhd.nih.gov/about/directors-corner/messages/message_10-06-16.html
• Badgett MVL. (2009). Best Practices for Asking Questions about Sexual Orientation on Survey. Los Angeles: The Williams Institute. Accessed August 7, 2023.  https://escholarship.org/uc/item/706057d5
• Badgett MVL et al; the GenIUSS Group. (2014). Best Practices for Asking Questions to Identify Transgender and Other Minority Respondents on Population-Based Surveys. Los Angeles: The Williams Institute. Accessed August 7, 2023. https://williamsinstitute.law.ucla.edu/wp-content/uploads/Survey-Measures-Trans-GenIUSS-Sep-2014.pdf
• Spade D. Normal Life: Administrative Violence, Critical Trans Politics, and the Limits of Law. Durham, NC: Duke University Press; 2015.
• Brown I, McKenzie M, Srirangam A, Patel S. Making an Inclusive Impact: LGBTQ+ Health Equity in Clinical Trials. Poster presented at Drug Information Association Global Annual Meeting: June 25-29, 2023; Boston, MA.
• Data on File. Genentech, Inc. South San Francisco, CA.
• Cleveland Clinic Impact Report. Health Equity Symposium. Accessed August 7, 2023. https://drive.google.com/file/d/13sg7VGfm12geGFfZYc_2ZVCZc369kipK/view
• VCU Massey Cancer Center. On the Road to Trust. Accessed August 7, 2023. https://drive.google.com/file/d/16ej8SZaj8grI0W1pjedJdiw370iElibb/view
• Washington Health Alliance. DEI Summary Report. Accessed August 7, 2023. https://docs.google.com/document/d/1yQ6vrlyM7QQp76c5o-BhOVUG6NwLJ3qW/edit