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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.

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.