Useful references and documents

Just sharing some documents I have for future conversations! Appendices C and D here (https://docs.google.com/document/d/1ux9s9nkVcWdZWC1rq22tln_RU7nRtdIBP7ku-unm7HQ/edit?usp=sharing) summarize most other standards/surveys I've seen at this point (~48 so far), which can be an effective starting point. I also provided these tables (https://docs.google.com/document/d/1oN4nmfylAUKB1okDildiIkW6bs1JAGyR8oAX2t1NKUw/edit?usp=sharing) for usage in HL7's parallel process.

Additionally, I suggested several changes in hierarchy and terminology for SNOMED specifically in 2018, available here (https://drive.google.com/file/d/1apYB9DWv47aHg0h2-DwuKGUMQlbOYMWz/view?usp=sharing and https://drive.google.com/file/d/1GQGda8nVeOCXdDJ-TvoDgnfEEmYsedT4/view?usp=sharing). These may also be helpful in starting some discussions move forward.

Finally, there's the Gender, Sex, and Sexual Orientation (GSSO) ontology I developed (https://github.com/Superraptor/GSSO), which is now part of the OBO Foundry ontologies (http://www.ontobee.org/ontology/GSSO), which contains over 10,000 LGBTQIA+-related terms. The creation of the GSSO involved the review of subject headings, classification schemes, ontologies, controlled vocabularies, thesauri, dictionaries, encyclopedias, and glossaries of which a full index of the print sources is available here (warning, this is a huge document, around 250 pages and covering 58 resources: https://drive.google.com/file/d/14MrIaCAEKiGIV8U1VvsppTpSbbfg3Jn9/view?usp=sharing).

Here are also some of the more recent works in the space related specifically to EHR data:

• Cahill, Sean and Harvey J. Makadon. "Sexual Orientation and Gender Identity Data Collection in Clinical Settings and in Electronic Health Records: A Key to Ending LGBT Health Disparities" (March 2014). LGBT Health. Vol. 1, No. 1. pp. 34-41. Published online 5 September 2013. PMID: 26789508. DOI: 10.1089/lgbt.2013.0001.

• Cahill, Sean and Harvey J. Makadon. "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" (September 2014). LGBT Health. Vol. 1, No. 3. pp. 157-60. Published online 30 July 2014. PMID: 26789707. DOI: 10.1089/lgbt.2014.0033.

• Deutsch, Madeline B., JoAnne Keatley, Jae Sevelius, and Starley B. Shade. "Collection of Gender Identity Data Using Electronic Medical Records: Survey of Current End-user Practices" (November 2014). Journal of the Association of Nurses in AIDS Care. Vol. 25, No. 6. pp. 657-63. PMID: 24880490. DOI: 10.1016/j.jana.2014.04.001.

• Thompson, Hale M. "Visible Lives: Electronic Health Records and the Biomedical Surveillance of Gender Nonconformity" (2015). University of Illinois at Chicago. Thesis.

• Callahan, Edward J., Nicole Sitkin, Hendry Ton, W. Suzanne Eidson-Ton, Julie Weckstein, and Darin Latimore. "Introducing Sexual Orientation and Gender Identity Into the Electronic Health Record: One Academic Health Center's Experience" (February 2015). Academic Medicine. Vol. 90, No. 2. pp. 154-60. DOI: 10.1097/ACM.0000000000000467.

• Deutsch, Madeline B. and David Buchholz. "Electronic Health Records and Transgender Patients—Practical Recommendations for the Collection of Gender Identity Data" (June 2015). Journal of General Internal Medicine. Vol. 30, No. 6. pp. 843-7. Received 18 July 2014. Revised 25 October 2014. Accepted 5 December 2014. Published online 6 January 2015. PMID: 25560316. PMCID: PMC4441683. DOI: 10.1007/s11606-014-3148-7.

• Dunne, M. J., Lewis A. Raynor, Erika K. Cottrell, and William J. A. Pinnock. "Interviews with Patients and Providers on Transgender and Gender Nonconforming Health Data Collection in the Electronic Health Record" (1 February 2017). Transgender Health. Vol. 2, No. 1. pp. 1-7. DOI: 10.1089/trgh.2016.0041.

• Wynholds, L. A. "Invisible Bodies: Representing Gender and Gender Variance in Medical Records and Health Data" (2018). University of California, Los Angeles. Thesis. Permalink: 0nq6j6np. [1]

• Grasso, Chris, Michal J. McDowell, Hilary Goldhammer, and Alex S. Keuroghlian. "Planning and implementing sexual orientation and gender identity data collection in electronic health records" (1 January 2019). Journal of the American Medical Informatics Association. Vol. 26, No. 1. pp. 66-70. Received 6 June 2018. Revised 16 August 2018. Accepted 23 October 2018. PMID: 30445621. PMCID: PMC6657380. DOI: 10.1093/jamia/ocy137.

• Burgess, Claire, Michael R. Kauth, Caroline Klemt, Hasan Shanawani, and Jillian C. Shipherd. "Evolving Sex and Gender in Electronic Health Records" (June 2019). Federal Practitioner. Vol. 36, No. 6. pp. 271-7. PMID: 31258320. PMCID: PMC6590954.

• Ehrenfeld, Jesse M., Keanan Gabriel Gottlieb, Lauren Brittany Beach, Shelby E. Monahan, and Daniel Fabbri. "Development of a Natural Language Processing Algorithm to Identify and Evaluate Transgender Patients in Electronic Health Record Systems" (13 June 2019). Ethnicity & Disease. Vol. 29, No. S2. pp. 441-50. PMID: 31308617. PMCID: PMC6604788. DOI: 10.18865/ed.29.S2.441.

• Foer, Dinah, David M. Rubins, Anthony Almazan, Kit Chan, David W. Bates, and Ole-Petter R. Hamnvik. "Challenges with Accuracy of Gender Fields in Identifying Transgender Patients in Electronic Health Records" (December 2020). Journal of General Internal Medicine. Vol. 35. pp. 3724-5. Received 31 October 2019. Accepted 20 November 2019. Published online 5 December 2019. DOI: 10.1007/s11606-019-05567-6.

Here is a link to the HL7 Gender harmony project:

https://confluence.hl7.org/display/VOC/The+Gender+Harmony+Project

And to the recently passed ballot for vocabulary:

https://confluence.hl7.org/download/attachments/40743893/HL7_SPEC_GENDER_HARMONY%20DRAFT%20ID-submitted.docx?api=v2