HL7 Cross Paradigm Implementation Guide: Gender Harmony - Sex and Gender Representation, Edition 1
1.0.0 - release

HL7 Cross Paradigm Implementation Guide: Gender Harmony - Sex and Gender Representation, Edition 1, published by HL7 Terminology Infrastruture Work Group. This is not an authorized publication; it is the continuous build for version 1.0.0. This version is based on the current content of https://github.com/HL7/fhir-gender-harmony/ and changes regularly. See the Directory of published versions


This is the original bibliography provided in the Gender Harmony initial informative specification.

  1. If They Don’t Count Us, We Don’t Count: Trump Administration Rolls Back Sexual Orientation and Gender Identity Data Collection
  2. Evolving Sex and Gender in Electronic Health Records
  3. A rapid review of gender, sex, and sexual orientation documentation in electronic health records
  4. Collecting Sexual Orientation and Gender Identity Information – Importance of the Collection and Use of These Data – CDC
  5. LGBT questions in electronic health records - UC Davis Medical Center
  6. Using sexual orientation and gender identity data in electronic health records to assess for disparities in preventive health screening services
  7. Patient Perspectives on Gender Identity Data Collection in Electronic Health Records: An Analysis of Disclosure, Privacy, and Access to Care
  8. Collecting Sexual Orientation and Gender Identity Data in Electronic Health Records: Workshop Summary
  9. IHS supports the inclusion of sexual orientation and gender identity in electronic health records
  10. Planning and implementing sexual orientation and gender identity data collection in electronic health records
  11. Respectful Collection of Demographic Data
  12. Chosen Name Use Is Linked to Reduced Depressive Symptoms, Suicidal Ideation, and Suicidal Behavior Among Transgender Youth
  13. Misgendering and experiences of stigma within health care settings for transgender individuals
  14. Bad Gender Measures & How to Avoid Them: A guide by a nonbinary psychologist
  15. Designing forms for gender diversity and inclusion
  16. Beyond the Binary: 5 steps to designing gender inclusive fields in your product
  18. Predictors and Mental Health Benefits of Chosen Name Use Among Transgender Youth
  19. Perspectives from Transgender and Gender Diverse People on How to Ask About Gender
  20. Trans Care Begins at… the Software?
  21. AMA Pushes Forward on Fully Inclusive EHRs for Transgender Patients
  22. Electronic Health Records and Transgender Patients—Practical Recommendations for the Collection of Gender Identity Data
  23. Electronic medical records and the transgender patient: recommendations from the World Professional Association for Transgender Health EMR Working Group
  24. Care of the Transgender Patient
  25. Sexual Orientation and Gender Identity Measures for Global Survey Research: A Primer for Improving Data Quality
  26. The Report of the 2015 U.S. Transgender Survey
  27. Bangladesh: Gender Recognition Process Spurs Abuse
  28. Empowering communities and strengthening systems to improve transgender health: outcomes from the Pehchan programme in India
  29. Indian transgender healthcare challenges
  30. Living on the extreme margin: social exclusion of the transgender population (hijra) in Bangladesh
  31. Transgender health in India and Pakistan
  32. Transgender patients face health-care discrimination, inadequate treatment
  33. Barriers to accessing health care among transgender individuals
  34. Address transphobia in Canada’s health system
  35. Rights in Transition: Making Legal Recognition for Transgender People a Global Priority
  36. Barriers and Facilitators to Transgender Healthcare Access in South Asia with Lessons for Nepal: A Qualitative Literature Review
  37. Who was Lou Sullivan?
  38. Why are trans men invisible in HIV prevention & care?
  39. A Death Robbed of Dignity Mobilizes a Community
  40. EMS Denied Transgender Patient Care Causing Her Death, Alleges Sheepshead Bay Lawyer
  41. Trans woman left to die with coronavirus symptoms by paramedics who ‘refused to treat her’ because she had HIV
  42. Transgender Americans Just Lost Health Protections. Now What?
  43. Ensuring an inclusive global health agenda for transgender people
  44. Catalyzing a Nursing Response to Healthcare Discrimination Against Transgender and Nonbinary Individuals
  45. Transgender Population Size in the United States: a Meta-Regression of Population-Based Probability Samples
  46. How Many Adults Identify as Transgender in the United States?
  47. Agenda for zero discrimination in health care. Geneva: The Joint United Nations Programme on HIV/AIDS
  48. Re: Völling
  49. In re Völling, Regional Court Cologne, Germany (6 February 2008)
  50. Groundbreaking SLPC Lawsuit Accuses South Carolina Doctors and Hospitals of Unnecessary Surgery on Infant
  51. Transgender Sterilisation Requirements in Europe
  52. Japan: Compelled Sterilization of Transgender People
  53. Forced and Coerced Sterilization: The Nightmare of Transgender and Intersex Individuals
  54. Unfit for Parenthood? Compulsory Sterilization and Transgender Reproductive Justice in Finland
  56. Compendium of legislation and policies
  57. Data collection in relation to LGBTI People
  58. Report on data collection and management
  59. Annual Review of the Human Rights Situation of Lesbian, Gay, Bisexual, Trans and Intersex People
  60. Do Ask, Do Tell: Capturing data on sexual orientation and gender identity globally
  61. Health Care System Fails Many Transgender Americans
  62. Health Records Adapting to Meet Transgender Needs
  63. When Gender Goes Awry in Electronic Health Records
  64. The Power and Limits of Classification — A 32-Year-Old Man with Abdominal Pain
  65. The problems with LGBTQ health care
  66. Why transgender people are ignored by modern medicine
  67. Transgender-inclusive measures of sex/gender for population surveys: Mixed-methods evaluation and recommendations
  68. In-Depth Review of Measuring Gender Identity
  69. Jay Kallio, Model Activist to the End, Dead at 61
  70. Global Attitudes Toward Transgender People
  71. Human Rights Watch Country Profiles: Sexual Orientation and Gender Identity
  72. Global health burden and needs of transgender populations: a review
  73. The missing trans women of science, medicine, and global health
  74. Health Care for Transgender Individuals
  75. Healthcare avoidance due to anticipated discrimination among transgender people: A call to create trans-affirmative environments
  76. Sex and gender influences on pharmacological response: an overview
  77. Sex And Gender Equity in Research (SAGER): reporting guidelines as a framework of innovation for an equitable approach to gender medicine. Commentary
  78. Legato M.J. Principles of Gender-Specific Medicine. Gender in the Genomic Era. 3rd ed. Elsevier Academic Press; Amsterdam, The Netherlands: Boston, MA, USA: 2017. 792p
  79. CDC - Collecting Sexual Orientation and Gender Identity Information
  80. Affirming Transgender Youths’ Names and Pronouns in the Electronic Medical Record
  81. Suggested Tables for Gender Harmony Project
  82. Transgender data collection in the electronic health record: Current concepts and issues
  83. Australian Government Guidelines on the Recognition of Sex and Gender
  84. Fenway Health: Health Care Is A Right, Not A Privilege.
  85. Callen-Lorde. 2021. A letter from our Executive Director, Wendy Stark - Callen-Lorde.
  86. UCSF Transcare. 2021. UCSF Transgender Care, Home Page.
  87. Trans Care BC. 2021. Improving gender-affirming care across BC.
  88. Rainbow Health Ontario. 2021. Rainbow Health Ontario, Home Page.
  89. Doc 9303: Machine Readable Travel Documents (2015). 7th Ed. Part 7: Machine Readable Visas
  90. Emergency Care for Transgender and Gender-Diverse Children and Adolescents (Ethics CME).
  91. Tate CC, Youssef CP, Bettergarcia JN. Integrating the Study of Transgender Spectrum and Cisgender Experiences of Self-Categorization from a Personality Perspective. Rev Gen Psychol. 2014 Dec;18(4):302–12.
  92. PFLAG National Glossary of Terms. 2020
  93. Mitchell G. Some Terms Are Better Than Others. Medium; 2017.
  94. Mere A. 64 Terms That Describe Gender Identity and Expression. Healthline Media; 2019
  95. Bailar S. Terminology. 2015.
  96. Fonseca S. Designing forms for gender diversity and inclusion.
  97. Bauer GR, Braimoh J, Scheim AI, Dharma C. Transgender-inclusive measures of sex/gender for population surveys: Mixed-methods evaluation and recommendations. Dalby AR, editor. PLOS ONE. 2017 May 25;12(5):e0178043.
  98. Holzberg J, Ellis R, Virgile M, Nelson D, Edgar J, Phipps P, et al. Assessing the Feasibility of Asking About Gender Identity in the Current Population Survey: Results from Focus Groups with Members of the Transgender Population. U.S. Census Bureau; 2017.
  99. Puckett JA, Brown NC, Dunn T, Mustanski B, Newcomb ME. Perspectives from Transgender and Gender Diverse People on How to Ask About Gender. LGBT Health. 2020 Sep 1;7(6):305–11.
  100. Ke M. How to make an LGBTQ+ inclusive survey [Internet]. Medium; 2020.
  101. Stock K. Changing the concept of “woman” will cause unintended harms [Internet]. The Economist Newspaper Limited; 2018 [cited 2021 Jan 8].
  102. Jenkins K. Amelioration and Inclusion: Gender Identity and the Concept of Woman*. Ethics. 2016 Jan;126(2).
  103. Holston-Zannell LB. Black Trans Women Are Being Murdered in the Streets. Now the Trump Administration Wants to Turn Us Away From Shelters and Health Care [Internet]. American Civil Liberties Union; 2019.
  104. Taylor L Boyer, Ada O Youk, Ann P Haas, George R Brown, Jillian C Shipherd, Michael R Kauth, Guneet K Jasuj, John R Blosnich, Suicide, Homicide, and All-Cause Mortality Among Transgender and Cisgender Patients in the Veterans Health Administration.
  105. Transgender data collection in the electronic health record: Current concepts and issues
  106. Sun, Simón(e) D. “Stop Using Phony Science to Justify Transphobia” (13 June 2019). Scientific American.