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Documenting Current Gender Identity and Assigned Sex at Birth

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Current Gender Identity, Assigned Sex at Birth, and Administrative Gender

Documentation of both current gender identity and assigned sex at birth is critical for delivering appropriate care to transgender patients. We strongly caution that current gender identity data must be the information that populates the “gender” field on patient identification materials, such as hospital wristbands, and should be used for purposes such as making room assignments.

Some transgender people may not identify as transgender, but only as male or female. In these cases, assigned sex at birth can indicate that the individual is transgender, which allows providers to offer the full range of care – such as anatomically appropriate preventive screenings – that meets the individual’s needs. Data on sex assigned at birth are also useful for the development of algorithms for clinical decision support.

In addition to current gender identity and sex assigned at birth, it is critical to ask patients their preferred name and gender pronoun. This information should be used consistently by clinical staff in all conversations with or about the patient. Use of a name or pronoun that does not match that person’s current gender identity is stigmatizing and creates a hostile environment that can cause the patient to not return for health care in the future, or even to file a formal complaint of discrimination. Preferred pronouns are she/her/her for transgender women and he/him/his for transgender men. Some patients, especially younger patients, may identify outside of the gender binary and not identify strictly as male or female. These patients may prefer gender neutral pronouns that can include they/them/their or other, new pronouns such as ze/zir/zir.  It’s important to ask the patient what pronoun the patient wants to use and use it consistently.

It is important to note that the HL7 codes for “administrative gender” are separate and distinct from current gender identity and assigned sex at birth. Administrative gender data should only be used as necessary, such as for insurance billing purposes (though this use is rapidly becoming obsolete as rules regarding insurance coverage for transgender individuals change), and should not be used for identifying, housing, or communicating with patients.As an example, consider a transgender woman (assigned male sex at birth, current gender identity is female).

The relevant data in the record would be:

  • Current gender identity: SNOMED code “identifies as female gender” or “transgender woman”
  • Assigned sex at birth: SNOMED code “male”
  • “Sex”/Administrative gender: preferentially HL7 code “female”

Regardless of the data in the administrative gender field, this individual should be referred to as “she” and “her” throughout her time in the clinical setting. Similarly, identification such as a wristband should indicate this individual’s sex as “female,” and in sex-segregated circumstances like room assignments, she should be housed according to her female gender identity.

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Questions or Suggestions? Let us know at doaskdotell@fenwayhealth.org.

Citations

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[1] www.aha.org/advocacy-issues/disparities/index.shtml
[2] HRET Disparities Toolkit. http://www.hretdisparities.org/
[3] Committee on Lesbian, Gay, Bisexual, and Transgender Health Issues and Research Gaps and Opportunities; Board on the Health of Select Populations; Institute of Medicine. 2011. The Health of Lesbian, Gay, Bisexual, and Transgender (LGBT) People: Building a Foundation for Better Understanding, Washington, DC: National Academies Press. Available from http://www.nap.edu/catalog.php?record_id=13128.
[4] Institute of Medicine. 2012. Sexual Orientation and Gender Identity Data Collection in Electronic Health Records: A Workshop. Washington, DC: National Academies Press. Available from http://www.iom.edu/Activities/SelectPops/LGBTData.aspx
[5] U.S. Department of Health and Human Services. 2010. Healthy People 2020. Lesbian, gay, bisexual and transgender health. Available from http://www.healthypeople.gov/2020/topicsobjectives2020/overview.aspx?topicid=25.
[6] U.S. Department of Health and Human Services. 2011, June 29. Affordable Care Act to improve data collection, reduce health disparities. News release. Available from www.hhs.gov/news/press/2011pres/06/20110629a.html
[7] The Joint Commission. 2010. Advancing Effective Communication, Cultural Competence, and Patient- and Family-Centered Care: A Roadmap for Hospitals. Oakbrook Terrace, IL: The Joint Commission, 37.
[8] The Joint Commission. 2011. Advancing Effective Communication, Cultural Competence, and Patient- and Family-Centered Care for the Lesbian, Gay, Bisexual, and Transgender (LGBT) Community: A Field Guide. Oak Brook, IL: Joint Commission Resources. http://www.jointcommission.org/assets/1/18/LGBTFieldGuide.pdf.
[9] The Joint Commission. 2010. 11.
[10] Institute of Medicine. 2001. Crossing the Quality Chasm. Available at http://www.iom.edu/Reports/2001/Crossing-the-Quality-Chasm-A-New-Health-System-for-the-21st-Century.aspx
[11] Baker KE, Durso LE, Cray AS. 2014. Moving the Needle: The Impact of the Affordable Care Act on LGBT Communities. Available at https://www.americanprogress.org/issues/lgbt/report/2014/11/17/101575/moving-the-needle/ Washington, DC: Center for American Progress.
[12] U.S. Department of Health and Human Services. 2010. Healthy People 2020: LGBT Health Topic Area and Objectives. Available at http://www.healthypeople.gov/2020/topics-objectives/topic/lesbian-gay-bisexual-and-transgender-health/objectives
[13] U.S. Department of Health and Human Services. 2011. Plan for Health Data Collection on Lesbian, Gay, Bisexual, and Transgender (LGBT) Populations. Available at http://minorityhealth.hhs.gov/templates/browse.aspx?lvl=2&lvlid=209
[14] Letter from Leon Rodriguez, Director, Health & Human Servsices, Office of Civil Rights, to Maya Rupert, Federal Policy Director, National Center for Lesbian Rights. 2012, August 6. Available at https://www.nachc.com/client//OCRLetterJuly2012.pdf.
[15] Institute of Medicine. 2001. Crossing the Quality Chasm. Available at: http://www.iom.edu/Reports/2001/Crossing-the-Quality-Chasm-A-New-Health-System-for-the-21st-Century.aspx
[16] Berwick DM, Nolan TW, Whittington J. 2008. The Triple Aim: Care, Health and Cost. Health Aff. 27(3):759-769.
[17] The triple aim framework is used in the U.S. Department of Health and Human Services publication National Strategy for Quality Improvement in Health Care. 2011. Available at http://www.ahrq.gov/workingforquality/nqs/nqs2011annlrpt.htm
[18] The Joint Commission. 2011. Advancing Effective Communication, Cultural Competence, Patient- and Family-Centered Care for the Lesbian, Gay, Bisexual, and Transgender Community: A Field Guide. Available at http://www.jointcommission.org/lgbt/
[19] Patient-Centered Outcome Research Institute. 2013. Patient-Centered Approaches to Collect Sexual Orientation/Gender Identity Information in the Emergency Department. Available at http://pfaawards.pcori.org/node/20/datavizwiz/detail/3980
[20] Office of Minority Health. U.S. Department of Health and Human Services. 2013. National Standards for Culturally and Linguistically Appropriate Services in Health and Health Care: A Blueprint for Advancing and Sustaining CLAS Policy and Practice. Available at https://www.thinkculturalhealth.hhs.gov/pdfs/EnhancedCLASStandardsBlueprint.pdf
[21] 2014 PCMH Standard 2: Team-Based Care, Element C: Culturally and Linguistically Appropriate Services, Factor 1 (diversity); 2014 PCMH Standard 3: Population Health Management, Element C: Comprehensive Health Assessment, Factor 2 (family/social/cultural characteristics). Available at www.ncqa.org.
[22] Josiah Macy Foundation. 2012. AAMC’s Marc Nivet on “Developing LGBTI Competencies.” Josiah Macy Foundation News and Commentary.Available at http://macyfoundation.org/news/entry/aamcs-marc-nivet-on-developing-lgbti-competencies-in-medical-school-curricu
[23] Association of American Medical Colleges. No date. Lesbian, Gay, Bisexual, Transgender and/or Disorders of Sex Development-Affected Patient Care Project, Available at
https://www.aamc.org/initiatives/diversity/portfolios/330894/lgbt-patientcare-project.html. See also
https://www.mededportal.org/icollaborative/about/initiatives/lgbt
[24] Hollenbach, A.D., K.L. Eckstrand, and A. Dreger (eds.). 2014. Implementing Curricular and Institutional Climate Changes to Improve Health Care for Individuals Who are LGBT, Gender Nonconforming, or Born with DSD: A Resource for Medical Educators. Washington, DC: American Association of Medical Colleges. http://lgbt.ucsf.edu/sites/lgbt.ucsf.edu/files/wysiwyg/AAMC_LGBT-DSD%20Report%202014.pdf.
[25] Deutsch M, Green J, Keatley J, Mayer G, Hastings J, and Hall A. 2013. Electronic medical records and the transgender patient: Recommendations from the World Professional Association for Transgender Health EMR Working Group. Journal of the American Medical Informatics Association. 0:1-4. Doi:10.1136/amianjnl-2012-001472.
[26] Ibid.
[27] Ibid.

Resources

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Resources

  • Frequently Asked Questions: UDS Reporting on SO/GI for UDS 2016 (Updated October 2016). [Download PDF]

Webinars

  • Collecting and Reporting Sexual Orientation and Gender Identity Data: Stories from the Field. Webinar presented by the National LGBT Health Education Center at the Fenway Institute. September 22, 2016. [Webinar]
  • Do Ask, Do Tell! Collecting Data on Sexual Orientation and Gender Identity in Health Centers. Webinar presented by Harvey Makadon and Chris Grasso, Fenway Institute. April 2016. [Webinar]

Issue Briefs

  • Collecting Sexual Orientation and Gender Identity Data in Electronic Health Records: Taking the Next Steps, National LGBT Health Education, August 2015. [Download PDF]

collecting

  • Preguntas Sobre Orientación Sexual e Identidad de Género . National LGBT Health Education Center. 2016. [Download PDF]
  • Sample Process for Collecting Data from Patients in Clinical Settings. [Download PDF]

Patient Education

Journal Articles

  • Cahill S, Baker K, Deutsch M, Keatley J, Makadon H. April 2016. “Inclusion of sexual orientation and gender identity in Stage 3 Meaningful Use guidelines a huge step forward for LGBT health.” LGBT Health. 3(2): 100-103.
  • Cahill S, Singal R, Grasso C, King D, Mayer K, Baker K, Makadon H. September 2014. “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.
  • Deutsch, Green, Keatley, et al. 2013. “Electronic medical records and the transgender patient: Recommendations from the World Professional Association for Transgender Health EMR Working Group.” J Am Med Inform Assoc. 20:700-703. Doi:10.1136/amiajnl-2012-001472.
  • Cahill, S., & Makadon, H. 2013. “Sexual orientation and gender identity data collection in clinical settings and in Electronic Health Records: A key to ending LGBT health disparities.” LGBT Health. 1(1). 1-8.

Public Comment

  • Public comment to the Office of Health Information Technology on Health IT certification criteria. May 29, 2015. [Download PDF]
  • Public comment to the Center for Medicare and Medicaid Services on Meaningful Use Stage 3 proposed rule. May 29, 2015. [Download PDF]
  • Public comment on draft Interoperability Standards Advisory. May 1, 2015. [Download PDF]
  • Public comment on draft Shared Nationwide Interoperability Roadmap. April 3, 2015. [Download PDF]

Useful Links to Partner Organizations

Center of Excellence for Transgender Health at UCSF
The National LGBT Education Center

Policy Issues

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Policy Issues

Over the past five years the Institute of Medicine, the Joint Commission, and the Department of Health and Human Services’ Healthy People 2020 initiative have highlighted the health disparities experienced by lesbian, gay, bisexual, and transgender (LGBT) people and recommended the collection of sexual orientation and gender identity (SO/GI) data in order to track and improve LGBT health outcomes. Recently, a number of new federal policy initiatives and regulatory developments have supported the collection of SO/GI data in clinical settings in order to combat LGBT health disparities.

Inclusion of sexual orientation and gender identity in Stage 3 Meaningful Use guidelines

On October 6, 2015, the Centers for Medicare and Medicaid Services (CMS) and the Office of the National Coordinator for Health Information Technology (ONC) took a critical step forward in advancing the health of LGBT people by requiring all electronic health record (EHR) systems certified under the Meaningful Use incentive program to have the capability of collecting SO/GI data. The Meaningful Use program offers financial incentives to health care organizations to encourage them to use EHR technology to improve health outcomes and quality of care. The final rules for Meaningful Use Stage 3 released by CMS and ONC in 2015 require all EHR technology to have the capacity to record, change, and access structured SO/GI data in order to be certified. CMS indicated in the final rule that “CMS and ONC believe including SO/GI in the ‘demographics’ [certification] criteria [for EHRs] represents a crucial step forward to improving care for LGBT communities.”[1]

The ONC notes that the final rules do not require providers to collect SO/GI information. Rather, the requirement applies to vendors who are building certified EHR systems and health institutions and practices that are using these systems as part of their participation in the Meaningful Use program. Even though the rule does not require providers to collect SO/GI data, the CMS final rule notes that giving providers the capability to record and track this data will “help those within the patient’s care team to have more information on the patient that can aid in identifying interventions and treatments most helpful to the particular patient.”[2] Meaningful Use Stage 3 is scheduled to be implemented in 2018.

HRSA’s inclusion of SO/GI in the Uniform Data System for 2016

In March 2016, the Health Resources and Services Administration (HRSA) added SO/GI data as required elements to be reported yearly in the Uniform Data Set (UDS). Each year, health centers funded by HRSA report on their performance using measures defined in the UDS. These health centers provide care to 20 million people a year in the U.S. Beginning in calendar year 2016, health center program grantees will be required to report on SO/GI data collection. In HRSA’s Program Assistance Letter (PAL 2016-2), it stated that “sexual orientation and gender identity (SO/GI) can play a significant role in determining health outcomes,” and that “gaining a better understanding of populations served by health centers, including sexual orientation and gender identity, promotes culturally competent care delivery, and contributes to reducing health disparities overall.”

Center for Medicare and Medicaid Services promotes SO/GI data collection in its 2015 Equity Plan

In September 2015, the Center for Medicare and Medicaid Services (CMS) Office of Minority Health released the CMS Equity Plan for Improving Quality in Medicare. The goal of the plan is to develop innovative solutions that support access to high quality care, promote health care system efficiency, and ensure affordable health coverage for Medicare beneficiaries. One of the major priorities of the plan is to expand the collection, reporting, and analysis of standardized data. Under this priority area, CMS recommends increasing the collection of standardized SO/GI data in order to improve health care delivery and reduce health disparities. The collection of comprehensive SO/GI data is “required to plan for quality improvements, and to address changes among the target population over time.” CMS believes that increasing the collection of standardized data, including SO/GI data, is a critical first step to improving LGBT population health.

[1] Centers for Medicare & Medicaid Services. Final Rule. Oct. 2015. “Medicare and Medicaid Programs; Electronic Health Record Incentive Program – Stage 3 and Modifications to Meaningful Use in 2015 through 2017.” Department of Health and Human Services. Available online at: https://s3.amazonaws.com/public-inspection.federalregister.gov/2015-25595.pdf
[2] Ibid.

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Questions or Suggestions? Let us know at doaskdotell@fenwayhealth.org.

Staff Training

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A critical step in the process of effectively implementing SO/GI data collection in clinical settings is the training of clinical staff on LGBT health disparities, and on how to use SO/GI data and manage it in ways that meet the clinical needs of LGBT patients while concurrently protecting confidentiality and privacy. We are currently creating a training curriculum, which we will post to this website soon.

You can also view a December 2014 archived webinar from the National LGBT Health Education Center on collecting SO/GI data in EHRs.

Other Issues in Primary Care

Collecting Data on Sexual Orientation and Gender Identity in the Electronic Health Record: Why and How

  • Faculty: Harvey Makadon, MD, Director, the National LGBT Health Education Center and Chris Grasso, MPH, Associate Director for Informatics & Data Services, Fenway Health
  • First presented on December 15, 2014.
  • Archived

The Institute of Medicine has recommended routinely collecting sexual orientation and gender identity (SOGI) data from patients to help end lesbian, gay, bisexual, and transgender invisibility in health care as well to measure quality and progress in eliminating disparities. In addition, a growing number of federal agencies are using or testing SOGI questions in surveys; for example, HRSA is including gender identity questions in the upcoming 2014 Health Center Patient Survey.   In this webinar, Dr. Harvey Makadon of the National LGBT Health Education Center focuses on the rationale for collecting SOGI data, including health care inequalities faced by LGBT people, as well as the practical steps to implementing data collection within the electronic health record (EHR). Chris Grasso, MPH, the Associate Director for Informatics & Data Services at Fenway Health describes ways to collect SOGI information and incorporate it into the EHR.

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Questions or Suggestions? Let us know at doaskdotell@fenwayhealth.org.

How to Use the Data

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Health Data Systems: Decision Support and Coding

SO/GI data are relevant to numerous aspects of patient health. To support a wide range of actors in clinical settings in successfully collecting and using these data to promote patient health, developers of EHR software for hospitals, health centers, and other health systems should incorporate structured SO/GI data into decision support and coding.

Decision support needs to be built into the system to remind clinicians to do routine screenings that support the unique health needs of LGBT people. For example, it is important to screen for HIV and STDs as recommended by the CDC, and for cancer as appropriate, such as screening with anal cytology for anal cancer as appropriate. It is important to be mindful of the history of affirmation surgery in transgender people and recognize the need for screening based on an anatomical inventory reviewing current anatomy as recommended by Deutsch et al., 2013 (see Resource Bibliography section for full citation and URL) and doing breast, cervical and prostate cancer screening as appropriate.

The Electronic Medical Records Working Group of the World Professional Association for Transgender Health (WPATH) “recommends an individualized approach in the care of each transgender patient, based on a current inventory of organs as well as the patient’s own transgender status and sex- or gender-specific history.” (27) More detailed information about how to implement decision support and use appropriate coding for care provided to transgender individuals can be found in the following two articles, both publicly available:

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Questions or Suggestions? Let us know at doaskdotell@fenwayhealth.org.

Question Design Methodology: How to Ask SO/GI Questions

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SO/GI questions exist that have been shown to be acceptable to patients from diverse backgrounds in real-world settings. In 2013, The Fenway Institute and the Center for American Progress conducted a study that asked 301 people in the waiting rooms of health centers in Chicago, Baltimore, Boston, and rural Beaufort County, South Carolina how they felt about answering questions about sexual orientation and gender identity. Most respondents were heterosexual and non-transgender; more than half were people of color, and 7 percent were over age 65. A majority of the patients surveyed were heterosexual or straight and not transgender, and a sizable minority were LGBT. Across all of these variables and regardless of geography, respondents overwhelmingly supported the collection of SO/GI data in health care encounters. Specifically, 73 percent agreed that sexual orientation data are important for providers to know, and 82 percent agreed with regard to gender identity data. Most LGBT respondents said that the questions allowed them to accurately reflect their SO/GI.

Based on this and other studies, such as research conducted by the Center of Excellence for Transgender Health at the University of California at San Francisco on how to ask about gender identity in clinical settings,  (25) we recommend the following questions:

Sexual orientation:

Do you think of yourself as:

  • Lesbian, gay or homosexual
  • Straight or heterosexual
  • Bisexual
  • Something else (please specify): ___________
  • Don’t know

Gender identity:

With regard to gender identity, it is important to note that many transgender people do not identify as transgender. For example, a person who was assigned male at birth but whose current gender identity is female may choose “female” rather than “transgender.” Asking about sex assigned at birth as well as current gender identity provides better, more clinically relevant data and offers a clearer picture of the patient’s identity and clinical needs. As such, gender identity data collection should involve both of these concepts. Together, the questions below replace any existing “Sex: Male or Female?” questions on patient information forms and in EHRs.

Based on the 2013 Fenway/CAP study in four health centers, as well as prior research on how to ask about gender identity in clinical settings conducted by the Center of Excellence for Transgender Health at the University of California at San Francisco, (26) we recommend the following questions:

What is your current gender identity? 

  • Male
  • Female
  • Female-to-male (FTM)/Transgender Male/Trans Man
  • Male-to-Female (MTF)/Transgender Female/Trans Woman
  • Genderqueer, neither exclusively male nor female
  • Additional Gender Category/(or Other), please specify:____________
  • Decline to answer

What sex were you assigned at birth on your original birth certificate (Check one)

  • Male
  • Female
  • Decline to answer

We also suggest asking questions to prevent misunderstandings that may occur for transgender people who do not have identification documents that accurately reflect their current name and gender identity:

Preferred gender pronoun:
He/Him
She/Her
Something else (Specify:_____________)

Preferred name or alias:
Specify:______________

Preferred name and gender pronoun information has been shown to greatly facilitate patient-centered communication in clinical settings when coupled with appropriate staff training.

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Questions or Suggestions? Let us know at doaskdotell@fenwayhealth.org.

Information Technology Staff

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The IT department and staff are key in implementing an effective framework for collecting and using structured data on sexual orientation, gender identity, and other related aspects of patient identity within a hospital or health system. IT staff can identify infrastructure capacity and needs and are best able to integrate the necessary elements of the framework (codes, fields, etc.) into existing systems or, if needed, to modify the systems that exist.

Various questions that arise in the IT context around collecting sexual orientation and gender identity data include:

  • Is it possible to incorporate the actual script for asking the questions on the registration screen so front-line staff can explain or provide the rationale for why they are asking patients to provide information related to their sexual orientation and gender identity?
  • Can a “declined” response category be added for those patients who do not want to answer this question and decline to do so (this is different than “unavailable”)?
  • Is it possible to flag these responses in different colors to make it easier for staff (e.g., “declined” indicates do not ask again, and “unavailable” indicates ask again)?
  • Who will have access to the data, and can access permissions be easily modified?
  • Can modifications be made to the fields as terminology and concepts evolve over time?
  • Will all registration staff (in the hospital and those off-site) see the same registration screens once modifications are made?
  • How should decision support protocols build on the sexual orientation and gender identity data in these fields to assist clinicians in providing appropriate care for the clinical health care needs of LGBT people?

Registration & Admissions Staff

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Registration and admissions staff are often the first point of contact for patients, meaning that they play a major role in setting expectations for what the experience of care will be like. They are also the primary staff members charged with collecting information directly from patients and patient support figures.

The registration and admissions process is not set up to support detailed conversations related to sexual behavior or specific health risks or concerns. But by providing patients with an early structured opportunity to share demographic information about important aspects of their lives—such as sexual orientation, gender identity, families that may include a same-sex spouse or partner, preferred name, and preferred gender pronoun—registration and admissions staff can be an essential part of communicating a sense of openness and welcome to all patients, including LGBT people.