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GUIDELINES AND TIPS FOR COLLECTING PATIENT DATA ON SEXUAL ORIENTATION AND GENDER IDENTITY

January 2018

T A B L E O F C O N T E N T S

INTRODUCTION

Why Collect Data on Sexual Orientation and Gender Identity? How to Use This Guide
11

READY!

Creating a Team and a Timeline
Fig 1. Sample Timeline
223344455677
Developing a Workflow
Fig 2. Sample Process of Collecting SO/GI Data
Adding Questions to Registration Forms
Fig 3a. Recommended SO/GI Questions Fig 3b. Definitions of SO/GI Categories
Translations of Questions Definitions of SO/GI Categories Names and Pronouns
Fig 4. Sample Registration Form
Considerations for Children and Adolescents

SET!

  • Customizing the EHR
  • 8

Fig 5. Sample Pronoun Color Code
Training Staff
99

  • Educating Patients
  • 10

10 10 11
Patient Education Brochures
Fig 6. Sample SO/GI Patient Brochures
Privacy and Confidentiality Responding to Patient Questions and Concerns Discussing SO/GI during the Clinical Encounter Responding to Staff Concerns Creating a Welcoming and Inclusive Health Center LGBTQ Cultural Competency Resources

GO!

11 12 13 13 14

  • Piloting the Process
  • 15

15 16 16 17 18
Analyzing and Applying SO/GI Data Monitoring Data Quality
Fig 7. Sample Staff Roles in Data Quality Improvement

LESSONS FROM THE FIELD ADDITIONAL RESOURCES

I N T R O D U C T I O N

Why Collect Data on Sexual Orientation and Gender Identity?

Lesbian, gay, bisexual, transgender, and queer (LGBTQ) people experience significant health disparities and require preventive services and treatment interventions tailored to their unique needs. Yet health care providers often do not know the sexual orientation or gender identity (SO/GI) of their patients, leading to missed screenings, less effective counseling, culturally insensitive remarks, and other missteps. The process of asking all patients about their SO/GI empowers health care organizations to get to know their patients better, and to provide them with the appropriate, patient-centered services they need.

SO/GI data collection has been recommended by both the Institute of Medicine1,2 and the Joint Commission3 as a way to learn about which populations are being served, and to measure the quality of care provided to LGBTQ people. In recognition of the population health benefits of collecting SO/GI data, the Bureau of Primary Health Care (BPHC), HRSA added SO/GI as required elements to be reported yearly by Health Center Program grantees (health centers) in the Uniform Data System (UDS) beginning in Calendar Year 2016.4

Although some have raised concerns that the process of identifying LGBTQ people could invite stigma or discrimination, in actual practice, SO/GI data collection has encouraged health centers to increase the cultural competence of their care delivery and environment. Patients have found that sharing SO/GI information has facilitated important health-related conversations with clinicians they trust.

In sum, the reasons to collect SO/GI data are to:
• Help clinicians provide more effective patient-centered care; • Encourage staff to provide more culturally-sensitive services to LGBTQ patients; • Facilitate the monitoring of quality of care to LGBTQ populations; and • Reduce health disparities.

How to Use This Guide

The following guide is designed to help your health center successfully collect SO/GI data, no matter where you are in the process. For those just beginning, the guide can be used from start to finish. If you have already created a system, but have encountered challenges and questions, this guide can help you address them. Even if your system is working smoothly, you will find resources and recommendations here that will help you move to the next level of data collection and analysis.

1 Institute of Medicine. The health of lesbian, gay, bisexual, and transgender (LGBT) people: building a foundation for better understanding. Washington, DC: National Academies Press; 2011.
2 Institute of Medicine. Sexual orientation and gender identity data collection in electronic health records: a workshop. Washington, DC: National Academies Press; 2012.
3 The Joint Commission. 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; 2011.
4 Department of Health and Human Services, Health Resources and Services Administration. Program Assistance Letter (PAL 2016-02). Approved Uniform Data System Changes for Calendar Year 2016. March 22, 2016.

1

R E A D Y !

Creating a Team and a Timeline

The first step in setting up a successful SO/GI data collection system is to identify key staff who can meet regularly, be champions, and provide feedback on how the process is going. Although having LGBTQ people on the team is very helpful, it is not essential. All people can do this work effectively.

Ideally, one member of the team should be an executive (e.g., CEO, CFO) who can make sure the health center has the right resources to implement the process. Alternatively, the team can have regular meetings with senior management to update them on their progress. In addition, the team should have representatives from different departments, including clinical (e.g., medical, nursing), non-clinical (e.g., registration, patient services, billing), and health information technology (HIT) (e.g., electronic health record (EHR) building, data analysis).

Figure 1 provides a sample implementation timeline for SO/GI teams. Keep in mind that the length and timing of steps will vary by organization; in many cases, several of the steps can occur in parallel.

Figure 1. Sample SO/GI Implementation Timeline

Months 1-3: Month 4:

Plan implementation Conduct process mapping

Month 4-6: Month 6:

Modify electronic health record (EHR) systems Train staff; change forms, policies, and physical environment Pilot SO/GI in one department; use Plan-Do-Study-Act (PDSA) cycle; analyze outcomes Repeat process with another department; use PDSA cycle; analyze outcomes Expand to all departments/sites; monitor progress through data feedback reports Conduct first data summary report

Month 7: Month 8: Month 9-10: Month 14: Ongoing:

Monitor data quality

2

Developing a Workflow

The most efficient and effective way to collect SO/GI data is during patient registration. SO/GI data can be gathered along with other demographic information, such as race, ethnicity, and employment. This normalizes the process and ensures more complete data collection. In addition, it allows health centers to collect the data at the first patient visit, as well as to update the information during routine check-ins. Providers can then follow-up with patients to discuss SO/GI during the clinical exam.

There are various ways to integrate SO/GI into existing forms and protocols (see Figure 2):
• Patients can electronically enter SO/GI data through a patient portal at home, or onsite at a kiosk or on a tablet. Electronic methods provide the most privacy.

• Patients can complete paper or laminated registration forms. Patient services staff can then manually enter the data in the EHR.

• If SO/GI data is not reported, providers can ask about SO/GI during the social or sexual history, and can manually enter the data during or after the patient encounter.

SO/GI should be asked at the first clinical visit as well as at least annually, because this information can change over time.

Figure 2. Sample Process of Collecting SO/GI Data

3

Adding Questions to Registration Forms

SO/GI questions can be integrated into the demographics or social history section of the registration form. The SO/GI questions in Figure 3a have been studied in different health center populations and have been found to be acceptable by most patients.5 For definitions of SO/GI categories and terms, see Figure 3b on page 5. For information on how to code and report SO/GI data in the Uniform Data System (UDS), see the most

up-to-date UDS manual reporting instructions from BPHC.6

Figure 3a. Recommended SO/GI Questions

Do you think of yourself as (Check one):



Straight or heterosexual Lesbian, gay, or homosexual Bisexual Something else Don’t know Choose not to disclose

What is your current gender identity? (Check one):



Male Female Transgender Male/Trans Man/ Female-to-Male (FTM) Transgender Female/Trans Woman/ Male-to-Female (MTF) Genderqueer, neither exclusively male nor female Additional gender category, please specify: _______________ Choose not to disclose

What sex were you assigned at birth? (Check one):



Male Female Choose not to disclose

Important Note: the reason for asking both gender identity and sex assigned at birth is because some transgender people will identify their gender as ‘male’ or ‘female,’ and not as ‘transgender’ or ‘genderqueer’.

56

Cahill S, Singal R, Grasso C, King D, Mayer K, Baker K, 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(9):e107104. Bureau of Primary Health Care, HRSA. 2017 UDS Manual. August 31, 2017. OMB Number: 0915-0193, Expiration Date 2/28/2018. Available at: https://bphc. hrsa.gov/datareporting/reporting/2017udsreportingmanual.pdf

4

Translations of SO/GI Questions

Spanish and Chinese translations of SO/GI questions can be accessed from the National LGBT Health Education Center website. Health centers may want to first review these translations with people in their own communities before using them; in many cultures, LGBTQ terminology may not directly translate into a single word or phrase; and in some instances, the translations can be viewed as offensive. For translation into other languages, health centers can work with their own translators, employees, and/or local LGBTQ community groups.

Figure 3b. Definitions of SO/GI Categories

Sexual Orientation: describes how a person characterizes their emotional and sexual attraction to others.

Straight or heterosexual: describes people who are emotionally and sexually attracted to another gender (for example, women who are attracted to men; men who are attracted to women).

Lesbian, gay, or homosexual: describes people who are emotionally and sexually attracted to their own gender (for example, men who are attracted to men; women who are attracted to women).

Bisexual: describes people who are emotionally and sexually attracted to people of their own gender and people of other genders (for example, men who are attracted to men and women; women who are attracted to men and women).

Something else: an option for people who identify their sexual orientation as something other than the categories provided (for example, asexual, pansexual, queer, same-gender loving).

Don’t know: an option for people who do not know what their sexual orientation is. This option should also be used when the health center does not know the patient’s sexual orientation (i.e., the data has not yet been collected by the health center).

Choose not to disclose: an option for people who choose not to share this information.

Gender Identity: describes a person’s inner sense of their gender. For example, a person may think of themselves as male, as female, as a combination of male and female, or as another gender.

Male: describes someone who identifies themselves as male/man. Female: describes someone who identifies themselves as female/woman.

Transgender Male/Trans Man/ Female-to-Male (FTM): describes someone assigned female

at birth who has a male gender identity.

Transgender Female/Trans Woman/ Male-to-Female (MTF): describes someone assigned

male at birth who has a female gender identity. Genderqueer: describes someone who has a gender identity that is neither male nor female, or is a combination of male and female.

Additional gender category: an option for people who do not identify their gender with any of the categories provided.

Choose not to disclose: an option for people who choose not to share this information.

Sex assigned at birth: the sex (male or female) designated on a baby’s birth certificate, usually based on external genitalia.

5

Names and Pronouns

To facilitate patient-centered communication with LGBTQ patients, it is strongly suggested that registration forms include a field for patient pronouns as well as two name fields: one for the name of the patient on insurance records, and one for the name the patient uses. Having these fields is particularly important for transgender patients, as many have a name and gender identity that is different than what is listed on their insurance or identification documents.

A suggested way to ask is:
• What name would you like us to use? ______________________________________________ • What name is on your insurance records (if applicable)? _______________________________ • What are your pronouns? (e.g., he/him, she/her, they/them, etc.) ________________________

The patient’s name and pronouns should then be used consistently by all health care staff. Using incorrect names and pronouns can be very hurtful, even when unintentional. Keep in mind that many genderqueer people (and other people who do not identify as male or female), use gender-neutral pronouns such as “they” or “ze” rather than “he” or “she”. For that reason, it is recommended that the pronoun question be open-ended, or include a write-in option.

Names and pronouns should be asked during the first clinical visit as well as at least annually, because this information can change over time.

Figure 4 shows an example of a registration form that incorporates SO/GI, name fields, and pronoun fields, along with other pertinent demographic information.

Considerations for Children and Adolescents

Although health centers are required to collect SO/GI data on all patients ages 18 and older, it is up to each health center to decide whether to ask about SO/GI in younger patients. HRSA’s expectation is that health centers adhere to state laws and institutional policies.

Children 12 and Under

LGBTQ health experts recommend asking parents/guardians of children 12 and under about their children’s gender identity. Gender identity tends to emerge at very young ages (often at 2-3 years old). Parents/guardians generally know if their children identify with a different gender than the one traditionally associated with their birth sex. Providers who are made aware of this can help families appropriately support a child’s development by providing direct care or making referrals.

For children 12 and under, the sexual orientation question can be left on the registration form as an opening for any parent/guardian or patient who wishes to start a conversation with the provider. It is likely that most parents/guardians will answer “Don’t Know” or leave the question blank.

6
Adolescents 13–17

Most experts recommend that sexual orientation and gender identity be asked directly of adolescents 13 and older. To protect privacy and encourage openness, providers will want to ask these questions of adolescents without the parent/guardian in the room (as they do with other history questions that may not be answered truthfully with a parent/guardian nearby). After the patient answers, the provider should then ask if the patient is comfortable having that information in their records. SO/GI questions can also be asked on registration forms, but should always be re-asked by the provider, since the information may have been filled out by the parent/guardian, or under their watch. LGBTQ adolescents face increased risk of mental health problems, suicide, and HIV/STDs; by sharing SO/GI with their providers, these adolescents can receive the support, treatment, and prevention services they need.

Figure 4: Sample Registration Form

The information in your medical record is

Medical Record #

confidential and is protected under Massachusetts

(For office use only)

Client Registration

General Laws Ch. 111, Sec 70. Your written consent will be required for release of information except in the case of a court order.

Name on Legal Documents*

  • First
  • Middle Initial

Name you would like us to use:

Last

Sex on Legal Documents*

  • Female
  • Male

What are your pronouns?

(e.g., he/him, she/her, they/them)

*While we recognize a number of genders / sexes, many insurance companies and legal entities unfortunately do not.   Please be aware that the name and sex you have listed on your insurance must be used on documents pertaining to insurance, billing and correspondence.   If your name and pronouns are different from these, please let us know.

State ID # or License #

Date of Birth

Month Day Year

Social Security #

  • /
  • /

Your answers to the following questions will help us reach you quickly and discreetly with important information.

Home Phone Cell Phone Work Phone Best number to use:

  • (
  • )
  • (
  • )
  • -
  • (
  • )
  • Home
  • Cell
  • Work

  • Ok to leave voicemail?
  • Ok to leave voicemail?

Yes No

Ok to leave voicemail?

  • Yes No
  • Yes No
  • -
  • -

Local Address

  • City
  • State

State
ZIP ZIP

Billing Address (if different from above)

City

Email address: Occupation

  • Employer/School Name
  • Are you covered under school or employer’s insurance?

Yes No Relationship to you

Emergency Contact’s Name

Phone Number

If you are under 19, the Department of Public Health requires that you provide parent/guardian contact information.

Parent/Guardian Name Phone Number Relationship to you

We will send certain correspondence, such as bills, to your mailing address. How would you prefer to receive

other types of written correspondence? (check one)

  • Secure Email
  • Letter
  • Other

This information is for demographic purposes only and will not affect your care.

  • 1.) What is your annual income?
  • 2.) Employment Status 3.) Racial Group(s)

(check all that apply)

4.) Ethnicity

Hispanic/Latino/Latina Not Hispanic/Latino/Latina

______________________

No income
Employed full time
African American / Black Asian Caucasian / White Native American / Alaskan Native / Inuit
Employed part time Student full time Student part time Retired Unemployed Other ___________

5) Country of Birth

USA Other __________________

1a.) How many people (including you) does your income support?

Pacific Islander

__________________

Other ______________

6.) Preferred Language (choose one:)

7.) Do you think of yourself as (Check one:)

Lesbian, gay, or homosexual
Straight or heterosexual
Bisexual Something else Don’t know

Choose not to disclose

8.) Marital Status

Married Partnered Single Divorced

10.) Referral Source

Self Friend or Family Member Health Provider Emergency Room Ad/Internet/MediaOutreach WorkerSchool

English Español Français Português

Русский

Other_____________

9.) Veteran Status

Veteran Not a Veteran
Other _____________
Other _____________

11.)
12.) What sex were

What is your current gender identity? (Check one): Male Female
Genderqueer, neither exclusively male nor female Additional gender category, please specify: ___________________
Choose not to disclose

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    QUEER LIFE IS TRAGIC Lauren Berlant’s “Cruel Optimism” and Lee Edelman’s Negative Queerness in Life is Strange ​ Published in Sprinkle: An Undergraduate Journal of Feminist and Queer Studies, Vol. 11 ​ ​ By Tara Fredenburg ABSTRACT. Life is Strange (2015) by Raoul Barbet and Michel Koch has sparked outrage for “queerbaiting” ​ lesbian and bisexual women in the gaming community, but criticisms pointed toward the game have failed to address the game’s most pernicious argument. By placing the controversy within the historical context of the 1930s Hays Production Code, examining one of the game’s central lessons in conversation with philosopher Lauren Berlant’s concept of “cruel optimism” and critical theorist Lee Edelman’s anti-reproductive definition of queerness, I contend that Life is Strange (2015) reveals the inability of ​ adherents to heteropatriarchal ideals to conceive a world beyond the current, oppressive system by which we live. The 2015 video game Life is Strange by Raoul Barbet and Michel Koch has sparked outrage for ​ “queerbaiting” lesbian and bisexual members of the gaming community, but criticisms pointed toward the game have not yet gone far enough to dissect why its conclusion agitates queer players and what its agenda fails to do. By placing the phenomenon of contemporary queerbaiting within the historical context of the 1930s Hays Production Code, examining one of the game’s central moral takeaways in conversation with philosopher Lauren Berlant’s concept of “cruel optimism,” and then complicating that reading with critical theorist Lee Edelman’s anti-reproductive definition of queerness, I contend that Life is Strange (2015) reveals the inability and reluctance of uncritical ​ adherents to heteropatriarchal ideals to conceive of a world not steeped in such ideology.

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    This glossary was written to help give people the words and meanings to help make conversations easier and more accessible. Please note that each person who uses any of these terms does so in a unique way (especially terms that are used in the context of an identity label). If you do not understand the context in which a person is using one of these terms, it is always appropriate to ask. Please note that this is not an all-encompassing glossary of terms. Ace – Someone who identities as Asexual. Agender – A person without gender. An agender individual’s body does not necessarily correspond with their lack of gender identity. [Related Terms: neutrois, genderless, gender neutral] AIDS (Acquired Immunodeficiency Syndrome) - A chronic, potentially life-threatening condition caused by the human immunodeficiency virus (HIV). By damaging your immune system, HIV interferes with your body's ability to fight the organisms that cause disease. Ally – 1. Someone who confronts heterosexism, anti- LGBTQIA biases, heterosexual and cisgender privilege in themselves and others 2. Has concern for the well-being of lesbian, gay, bisexual, trans*, intersex, queer, and other similarly identified people 3. Believes that heterosexism, homophobia, biphobia and transphobia are social justice issues. Androgyne – A person appearing and/or identifying as neither man nor woman. Some androgyne individuals may present in a gender neutral or androgynous way. Aromantic – A person who experiences little or no romantic attraction to others. Asexual – A person who does not experience sexual attraction. They may or may not experience emotional, physical, or romantic attraction. Asexuality differs from celibacy in that it is a sexual orientation, not a choice.