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Patients/Consumers

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Patients should be provided with the resources necessary to help them understand that they are being asked whether they would like to share information about their sexual orientation and gender identity in order to ensure that everyone receives the highest quality of care and to reflect their provider’s interest in understanding each patient’s individual identity and experiences.

The Health Insurance Portability and Accountability Act (HIPAA) and the Affordable Care Act both provide protections against improper disclosure of personal medical information or other sensitive information—which would include information related to a person’s sexual orientation, gender identity, and transgender status—to employers, family members, or others without proper consent from the individual patient.

This project is developing a pamphlet for providers to share with their patients to clarify existing privacy protections and explain the importance of SO/GI data to the course and outcomes of their care.

Clinical Researchers

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For clinical researchers, de-identified structured data related to sexual orientation and gender identity is essential to advance research looking critically at LGBT population health disparities, aggregate measures of quality of care for LGBT patients, and aggregate LGBT patient outcomes. Large health care organizations such as Vanderbilt University, the University of California at Davis, the Veterans Administration, and Kaiser Permanente, as well as community health centers such as New York City’s Callen-Lorde and Boston’s Fenway Health, are already exploring opportunities to use electronic data on sexual orientation and gender identity to further aims related both to individual LGBT patient care and to LGBT population health research.

Clinicians

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The work of doctors, nurses, and other health care providers is at the heart of the health system, and care encounters based on mutual engagement and trust are essential for the health and wellbeing of all patients. Patients are more likely to establish effective therapeutic alliances with providers who demonstrate knowledge of, and sensitivity about, their communities and concerns. As such, regardless of whether the focus of the visit is a routine check-up, symptom presentation and diagnosis, or treatment, providers need to have information that allows them to understand their patients’ backgrounds and life experiences—including sexual orientation, gender identity, and related information such as preferred name, preferred gender pronoun, and families that may include a same-sex spouse or partner. Clinicians also need to understand clinical issues that may arise due to anatomical incongruence between a patient’s sex assigned at birth and gender identity, as described in more detail in the section entitled “How to Use the Data.”

A growing awareness among providers of LGBT patient needs is reflected in recent changes that are prompting health professional educational institutions to include LGBT health issues on a more routine and consistent basis. For example, the leadership of the Association of American Medical Colleges (AAMC) has publicly endorsed support for LGBT students and faculty and has committed to improving how curricula at medical schools address LGBT health issues. (22) The AAMC also established the LGBT & Disorders of Sexual Development (DSD)-Affected Patient Care Advisory Committee in 2012 and is actively collecting curricular tools for teaching about LGBTI health issues in MedEdPORTAL. (23) In November 2014 this advisory committee published 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. (24) The guide provides strategies for educating medical professionals in LGBT and intersex health disparities; ensuring inclusion and equality in health care for these populations; developing professional competency objectives to improve health care for lesbian, gay, bisexual, transgender, and intersex (LGBTI) people; integrating these competencies into medical school curricula; and assessing learning and evaluating the impact of curricular and campus climate initiatives.

Quality Improvement Staff

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The ultimate purpose of collecting information about sexual orientation and gender identity in clinical settings is to improve the quality of care for all patients. SO/GI data collection offers numerous opportunities to integrate the improvement of LGBT health into institutional and national quality improvement standards, policies, and practices.

Common national frameworks for quality improvement include the six aims of safety, timeliness, effectiveness, efficiency, patient-centeredness, and equity set forth by the Institute of Medicine (IOM), (15) and the “triple aim” of improved patient experiences of care, improved population health outcomes, and reduced costs developed by the Institute for Healthcare Improvement., (16, 17)

Within the IOM framework, for instance, the aim of patient-centeredness is particularly relevant to both overall LGBT population health and the experiences of individual LGBT patients. The Joint Commission published a field guide in 2011 that calls for routine SO/GI data collection in clinical settings as part of improving effective communication, cultural competence, and patient- and family-centered care for LGBT patients and families. (18) And in 2013 the Patient-Centered Outcomes Research Institute (PCORI) made its first award investigating improvement of patient-centered outcomes for LGBT patients by supporting a multi-year investigation of SO/GI data collection in the Emergency Department of the Johns Hopkins Hospital. (19)

Further, the National Committee on Quality Assurance released new standards in 2014 for patient-centered medical homes (PCMH). Echoing the updated HHS Culturally and Linguistically Appropriate Services (CLAS) Standards, (20) which now include sexual orientation and gender identity, these standards direct PCMHs to evaluate the diversity of their patient populations as part of a comprehensive health assessment, defining “diversity” as “a meaningful characteristic of comparison … that accurately identifies individuals within a non-dominant social system who are underserved. These characteristics of a group may include, but are not limited to, race, ethnicity, gender identity, sexual orientation, and disability.” (21)

Legal Affairs Staff

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Federal law permits health care organizations to collect data on demographic factors such as race, ethnicity, and primary language data from patients for quality improvement purposes. Sexual orientation and gender identity data are no different. In fact, as part of the Healthy People 2020 initiative, (12) as well as under the Affordable Care Act, (13) the U.S. Department of Health and Human Services has expressly committed to collecting more data on sexual orientation and gender identity through its surveys and programs.

The Affordable Care Act requires adherence to nondiscrimination in health care on the basis of gender identity and sex stereotyping, which encompasses some forms of discrimination against LGBT people. (14) Laws in roughly 160 local jurisdictions, including 18 states, also protect LGBT patients from discrimination on the basis of sexual orientation and gender identity. Collecting sexual orientation and gender identity data is an essential component of effective monitoring of consumer experiences and compliance with all applicable nondiscrimination laws.

Executive Leadership

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The last few decades have seen the emergence of a strong nationwide consensus among health system leaders about the importance of understanding the role that diverse aspects of patient identity such as race, ethnicity, and primary language play in health care. (10) Similarly, discussions of issues such as health disparities and patient-centered care convened by the Institute of Medicine, the U.S. Department of Health and Human Services, and other expert bodies are increasingly reflecting the experiences and challenges that LGBT people encounter in health care.

What’s more, as the expansion of health insurance coverage under the Affordable Care Act continues, more individuals from all walks of life will gain access to coverage and care, some for the first time. Between 2013 and 2014, for instance, insurance coverage among LGBT adults with incomes under 400 percent of the Federal Poverty Level—those potentially eligible for financial assistance to gain coverage under the law—rose from two in three (66 percent) to three in four (74 percent). (11) Welcoming these individuals as they seek health care will require leaders and their teams to place a clear emphasis on respecting and reflecting the diversity of the communities that they serve, including diversity related to sexual orientation and gender identity.

Who Should Use The Toolkit

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This Toolkit is intended to be useful for a wide range of stakeholders within health care institutions and systems.

For information related to a specific stakeholder category, please select from the list below:

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

How to Use The Toolkit

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Do Ask, Do Tell: A Toolkit for Collecting Sexual Orientation and Gender Identity Information in Clinical Settings is designed to help hospitals, health systems, community health centers, medical group practices, health plans, health center controlled networks, and other users understand the importance of collecting accurate demographic data on sexual orientation and gender identity. It is also intended to help a range of health system stakeholders, from CEOs to front-desk staff to providers, participate in institution-wide efforts to successfully design, introduce, and use systems, particularly EHRs, that incorporate the routine and standardized collection of SO/GI data.

The different sections of this toolkit can be read sequentially, for a fuller picture of the history of and rationale for collecting SO/GI data in clinical settings, or by selecting individual sections of interest from the pull down menu in the upper right hand corner.

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

Why Collect SO/GI Data?

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Why Collect Sexual Orientation and Gender Identity Data

Numerous authoritative sources call for the routine collection of sexual orientation and gender identity data in clinical settings:

  • The 2011 Institute of Medicine (IOM) report on LGBT health recommends the collection of sexual orientation and gender identity data in EHRs and notes that questions should be standardized to allow for the comparison and pooling of data to analyze the unique health needs of LGBT people.(3)
  • The 2012 IOM report on electronic SO/GI data collection in clinical settings supports the routine collection of structured SO/GI data in EHRs.(4)
  • Healthy People 2020 calls on clinicians to gather SO/GI data.(5)
  • Gathering SO/GI data in clinical settings is consistent with efforts of the U.S. Department of Health and Human Services to gather health data on LGBT populations as authorized under Section 4302 of the Affordable Care Act (ACA).(6)
  • The Joint Commission’s 2010 report, Advancing Effective Communication, Cultural Competence, and Patient- and Family-Centered Care: A Roadmap for Hospitals, encourages the collection of patient SO/GI data.(7)
  • The Joint Commission’s 2011 report, Advancing Effective Communication, Cultural Competence, and Patient- and Family-Centered Care for the Lesbian, Gay, Bisexual, and Transgender (LGBT) Community: A Field Guide, provides detailed suggestions for how to ask about sexual orientation and gender identity in clinical settings.(8)

The rational for collecting these data is similar to that regarding importance of gathering race and ethnicity data. According to the Joint Commission:

Hospitals must collect patient-level demographic data on race and ethnicity to identify the needs of individual patients and to eliminate disparities in the patient population. These critical data provide hospitals with information on the potential cultural needs of each patient, as well as an opportunity to monitor and analyze health disparities at the population level.(9)

These reasons are equally important with regard to sexual orientation and gender identity data.

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

Glossary

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This glossary of terms may be useful in developing good communication with LGBT people. A few of the more common terms include:

Sex: Either of the two categories—male and female—into which people are commonly divided based on characteristics such as anatomy. “Sex” can also refer to sexual activity or intercourse.

Assigned Sex at Birth: At birth, infants are assigned a sex (male or female), usually on the basis of the appearance of their external anatomy.

Gender: Attitudes, feelings, behaviors, and expectations that a culture associates with either males or females.

Gender Binary: The idea that there are only two genders (male/female and man/woman), and that a person must be one or the other.

Genderqueer: An umbrella term for gender identities other than man and woman. People who identify as genderqueer sometimes consider themselves outside of the gender binary.

Gender Identity: A person’s internal sense of being male, female, both, or another gender.

Gender Expression: A person’s way of demonstrating their gender identity to others. Examples include names, behavior, mannerisms, speech patterns, dress, and hair styles.

Gender Non-conforming: Refers to people whose gender expression is different from what society expects for a male or female.

Transgender: An umbrella term used when a person’s gender identity does not correspond with their assigned sex at birth. Some terminology includes transgender woman or transgender man, trans woman or trans man, male to female (MTF) person, female to male (FTM) person, and other terms.

Cisgender/Non-transgender: A person who is not transgender; i.e., someone whose gender identity and assigned sex at birth are the same.

Sexual Orientation: How people identify their physical and emotional attraction to others. Common terms for sexual orientation include “gay/lesbian,” “bisexual,” “straight/heterosexual,”,and “queer.” Some people use other terms to identify their sexual orientation.

Queer: A term used by some individuals to describe non-heterosexual sexual orientations. Many people refrain from using this term due to its historical use as a derogatory word.

Coming Out: A figure of speech–based on the slang phrase “coming out of the closet”—referring to an LGBT person’s self-disclosure or disclosure to others of one’s sexual orientation or gender identity.

Gender Affirmation/Transition: The period in which a transgender person “transitions” from one gender to another and affirms their gender identity. This may include: coming out; changing their name, dress, and voice; changing their sex on legal documents; taking cross-sex hormones, and/or having surgeries.

Gender-affirming Procedures: Hormonal, surgical and other medical procedures that are used to help to affirm an individual’s gender identity. Gender-affirming surgical procedures may also be referred to as gender confirmation surgeries, sex reassignment surgeries, and gender reassignment surgeries.

Cross-sex Hormone Therapy: Cross-sex hormones (estrogens in people assigned a male sex at birth and androgens in people assigned a female sex at birth) are used to induce or maintain the physical and emotional characteristics of the sex that matches the person’s gender identity.

Gender Dysphoria: The Diagnostic and Statistical Manual of Mental Disorders, 2013 Edition (DSM-5) lists this diagnosis for people who experience distress at the incongruence between their gender identity and the sex they were assigned at birth.

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Questions or Suggestions? Let us know at doaskdotell@fenwayhealth.org.[/vc_column_text][/vc_column][/vc_row]