Overcoming technical and cultural challenges to delivering equitable care for LGBTQ+ individuals in a rural, underserved area

Abstract

The lesbian, gay, bisexual, transgender, queer, or questioning (LGBTQ+) community is vulnerable to health-care disparities. Many health-care organizations are working to collect sexual orientation and gender identity in their electronic health records (EHRs), with the goal of providing more inclusive care to their LGBTQ+ patients. There are significant human and technical barriers to making these efforts successful. Based on our 5-year experience at Geisinger (an integrated health system located in a rural, generally conservative area), this case report provides insights to overcome challenges in 4 critical areas: (1) enabling the EHR to collect and use information to support the health-care needs of LGBTQ+ patients, (2) building a culture of awareness and caring, empowering members of the health-care team to break down barriers of misunderstanding and mistrust, (3) developing services to support the needs of LGBTQ+ patients, and (4) partnering with local communities to become a trusted health-care provider.

INTRODUCTION

In the 2011 report, “The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding,” the U.S. National Academy of Medicine recommended, with appropriate privacy controls in place, that information on patients’ sexual orientation and gender identity (SOGI) be collected in electronic health records (EHRs).¹ Since then, several publications have described approaches for collecting SOGI data, barriers to collecting these data, and ways in which these barriers can be overcome.^2–4 While much progress has been made, the reality is that most patients do not have SOGI information recorded in their health records, and the lesbian, gay, bisexual, transgender, queer, or questioning (LGBTQ+) community continues to be vulnerable to health-care inequities and suboptimal care.

Health disparities affecting LGBTQ+ people are well-documented: more than 50% report experiencing health-care discrimination and 28% say they have postponed medical care as a result.⁵ Compared to non-LGBTQ+ people, LGBTQ+ individuals experience lower rates of mammography⁶ and pap smear⁷ screenings, and higher rates of substance abuse,^8,9 smoking,⁹ unhealthy weight control/perception,¹⁰ HIV, and other sexually transmitted infections.^11,12 Without a consistent, standardized approach to collecting SOGI information, it is challenging to identify and eliminate health disparities.

This case report describes Geisinger’s evolving experience implementing SOGI workflows over a 5-year period from 2017 to 2021. In 2017, seeking to identify and provide better care to our LGBTQ+ patients, Geisinger added fields for gender identity and pronouns to its EHR and instructed registration staff to collect the information.¹³ This approach was unsuccessful. Both staff and patients felt alienated by the process, and the little information that was collected was not used to provide respectful, quality care. After 3 months, data collection was halted and an evaluation was undertaken.

MATERIALS AND METHODS

Geisinger created a physician-led, multidisciplinary team to understand why the initial approach failed and to design a new approach for collecting and using SOGI information. The team included executive leaders; physician and nursing leaders; information technology, human resources, and legal experts; frontline clinical and operations staff; and LGBTQ+ patients. To address prior shortcomings, the revised approach included: (1) enabling the technical and decision support capabilities of the EHR, (2) strengthening the organization’s culture of diversity and inclusion through education, (3) developing services to support the needs of LGBTQ+ patients, and (4) partnering with the community to develop greater trust.

Enabling technical and decision support capabilities of the EHR

Defining and adding data elements

Historically, EHRs have not included necessary fields to adequately capture SOGI-related information. Although the Affordable Care Act in the United States contains provisions to strengthen federal data collection efforts, there are no widely adopted standards, which causes fragmentation and interoperability issues between health information systems and state and federal agencies.¹⁴ Geisinger modified its EHR (Epic Corporation, Verona WI, USA) to enable the collection and use of the following structured data: Gender Identity, Birth Sex, Affirmation History, and Organ Inventory. Additionally, the EHR was configured to ensure inclusive documentation was available for existing data elements such as Legal Sex, Pronouns, Correct Name, Marital Status, and Emergency Contacts. Table 1 summarizes elements that were created or modified.

Table 1.

Discrete data elements needed in the EHR to support inclusive care

Data element	Description	Possible values
Legal Sex	The traditional EHR field for Sex, redefined to store Legal/Administrative Sex	Male Female Unknown X* Nonbinary* *In the United States, there is no standard, with some states adopting X or nonbinary. Many information systems will not accept X or nonbinary.
Gender Identity	How individuals perceive and call themselves	Male Female Transgender female/male-to-female Transgender male/female-to-male Other Choose not to disclose
Sexual Orientation	Individuals’ emotional, romantic, and/or sexual attraction	Straight (not lesbian or gay) Gay or Lesbian Bisexual Something else Do not know Choose not to disclose
Birth Sex	Sex observed and assigned at birth, typically based on anatomic and/or physiologic characteristics Although some states allow a patient to change the sex recorded on their Birth Certificate, this holds the original sex recorded	Male Female Unknown Not recorded Uncertain Choose not to disclose
Affirmation History	Documents transition steps for transgender patients	Steps taken Future plans
Organ Inventory	Documents organ history for transgender patients	Organs present Organs constructed Organs enhanced
Pronouns	Pronouns used to identify individuals	He/him/hers She/her/hers They/them/theirs Ze/zem/zir
Legal Name	Legal name on documents such as birth certificate, driver’s license, etc.	Legal first and last name
Preferred Name	The name a person prefers to be called	Preferred first and last name
Marital Status	Distinct options that describe a person’s relationship with a significant other	Must include designations for relationships with an unmarried partner
Emergency Contacts	Must be inclusive of same-sex parents and other diverse families	Include options for domestic partners and 2 contacts/guardians/parents of the same sex (eg, a child with 2 mothers or 2 fathers)

EHR: electronic health record.

Using the new data elements

To ensure SOGI information can be used to provide safe, quality care, clinical decision-making tools in the EHR were modified to correctly use the Legal Sex, Birth Sex, Organ Inventory, Legal Name, Correct Name, Pronouns, and Gender Identity data elements. Wherever the EHR used a patient’s sex, Geisinger endeavored to correctly map it to Legal Sex, Gender Identity, or Birth Sex, based on the context. Table 2 lists considerations for reviewing EHR clinical decision support and workflows. Table 3 provides detailed examples using Legal Sex, Sex Assigned at Birth and Pregnancy information for clinical decision support. Figure 1 shows examples of patient identifiers in the EHR in patient records, reports and arm bands.

Table 2.

Changes to clinical decision support and workflows using SOGI information

Decision support	Consideration
SOGI follow-up needed	When there is inconsistency among Legal Sex, Sex Assigned at Birth, and Gender Identity, alert the provider that additional information should be reviewed
Laboratory and Medications	Identify transgender patients and provide both male and female standard reference ranges
Blood Bank	Identify/alert for transgender patients to determine Rh factor for blood products
Medication alerts and Pregnancy-related Alerts	Use Legal Sex, Gender Identity, Sex Assigned at Birth, and Organ Inventory to determine immunizations, medications, and conditions including Rhogram, Perinatal, and Gestational Diabetes, Topiramate, Depakote, and Mycophenoloate
Health Maintenance	Use Legal Sex, Gender Identity, Sex Assigned at Birth, and Organ Inventory to determine appropriate Health Maintenance screenings including mammograms, prostate and cervical cancer, sexually transmitted diseases
Arm Bands and Other Labels	Add Preferred Name to patient identification on all labels including arm bands, medication, lab, specimen, and other labels
Bed Planning	Determine if Legal Sex or Gender Identity is used in bed planning (to cohort patients together)
Notes and Documentation	Use patient’s correct name and pronouns, using Legal Sex, Gender Identity, or Sex Assigned at Birth as applicable
Quality Reporting and Analytics	Use Legal Sex, Gender Identity, or Sex Assigned at Birth as applicable
Interfaces to Third Parties	Use Legal Sex, Gender Identity, or Sex Assigned at Birth as applicable, based on the values a third-party system is able to accept

SOGI: sexual orientation and gender identity.

Table 3.

Using Legal Sex, Sex Assigned at Birth, Organs and Pregnancy information for clinical decision support

Decision Support	Consideration
Pregnancy-related Alerts Immunization Safety Rhogam Perinatal Gestational Diabetes	Legal Sex is not clinically accurate for determining if a patient is pregnant. Update to disregard Legal Sex and instead consider Pregnancy Condition.
Medication Alerts Topiramate (Topamax) Depakote Mycophenoloate	Medication AlertsTopiramate (Topamax) DepakoteMycophenoloateLegal Sex is not clinically accurate for determining if a patient has a uterus and is able to bear children. Update to disregard Legal Sex and consider Sex Assigned at Birth, Organ Inventory, and Surgical History.
Cancer Screening Cervical (Pap) Mammography	Legal Sex is not clinically accurate for determining if a patient has a cervix or breasts. Update to disregard Legal Sex and consider Organ Inventory.
STD Screening Chlamydia	Legal Sex is not clinically accurate for determining if a patient has female organs. Update to disregard Legal Sex and consider Sex Assigned at Birth.

Figure 1.

Examples of patient identifiers in the EHR in the patient record, reports and arm bands. EHR: electronic health record.

Data collection workflow

Multiple options were considered to collect SOGI information, including face-to-face discussion and self-reported questionnaires. It is imperative that patients understand the questions, feel respected, know why the information is being collected and how it will be used, and understand how their privacy is being protected. Figure 2 illustrates the workflow Geisinger implemented for collecting SOGI information during a clinic encounter.

Figure 2.

Data collection workflow implemented at Geisinger for sexual orientation and gender identity-related information.

Developing a culture of diversity and inclusion

Two key elements helped to prepare the organization to think more inclusively about caring for LGBTQ+ individuals. First, Geisinger embraced diversity and inclusion as a foundational principle. A Diversity and Inclusion Workgroup was established that included members of the LGBTQ+ community. The workgroup modified patient, visitor, and staff policies to ensure respect and inclusion were foundational. It made recommendations for clinical and operational workflows and communicated goals and expectations across the organization. Policies designed to protect and welcome LGBTQ+ community members were not only communicated to staff but also to patients and visitors.

Second, comprehensive education programs on the needs and rights of the LGBTQ+ community were implemented for all staff, including personnel in Registration, Environmental Services, and Food Services departments. Educational programming focused on (1) cultural awareness training including Cultural Competency, Unconscious Bias, and SafeZone training LGBTQ+ learning; and (2) clinical and EHR workflow training. The education effort focused on helping employees first understand how they are supported as individuals and then concentrated on how they are expected to support individuals of all backgrounds and preferences. Clinical training focused on the clinical needs of the LGBTQ+ community, including what information to collect and how to use that information when ordering and interpreting diagnostic tests, prescribing medications, and tracking health maintenance issues.

Key challenges were developing effective staff training and allocating sufficient time. Geisinger leadership committed to requiring staff to participate in training sessions. Interactive trainings, where staff practiced using preferred pronouns, asking sensitive questions, and apologizing if a mistake was made were found to be the most effective.

Developing services to support the needs of LGBTQ+ patients

Based on the efforts to collect SOGI information, Geisinger anticipated that patients would request services to meet their LGBTQ+ health needs. Initially, many services were not available at Geisinger, requiring patients to travel to metropolitan areas some 2–3 hours away. Over time, the organization implemented the directory of services available to Geisinger’s patients and clinicians shown in Figure 3.

Figure 3.

Geisinger services available for clinicians and the LGBTQ+ community. LGBTQ+: lesbian, gay, bisexual, transgender, queer, or questioning.

Partnering with the LGBTQ+ community to develop trust

An essential step in providing equitable care includes outreach to the LGBTQ+ community to convey that the organization is working to provide an inclusive, respectful, and welcoming environment. The following strategies were used to engage with Geisinger’s LGBTQ+ community.

1. Adopt the Healthcare Equality Index (HEI). The HEI, developed by the Human Rights Campaign, provides a policies and practices framework related to equity and inclusion for LGBTQ+ patients, visitors, and employees. Health systems are evaluated against the framework criteria. Geisinger was recognized for our dedication and commitment to LGBTQ+ inclusion. The Human Rights Campaign website identifies health systems meeting standards for providing safe, respectful care.

2. Patient Handouts. Geisinger developed an informational handout for patients explaining how staff are trained, why SOGI information is collected, and whom to contact with questions.

3. Web Pages. Geisinger developed a “Diversity & Inclusion” website outlining our approach and services.¹⁵ It explains how Geisinger recognizes and promotes diversity and inclusion across the organization and how Geisinger supports diverse patients, Geisinger Health Plan members, and learners. The LGBTQ+ Resources page explains LGBTQ+ care services and contact information for assistance.¹⁶

4. Community Groups. Geisinger collaborates with area LGBTQ+ community support groups and universities to provide education and training. Geisinger also involves LGBTQ+ members on our Patient and Family Advisory Councils.

RESULTS

During the implementation phase, to enhance clinical decision support to use Legal Sex, Gender Identity, Sex Assigned at Birth, Pronouns, and the Organ Inventory, Geisinger made changes to 13 existing alerts for medications and health maintenance topics. Geisinger also added Pronouns and Preferred Name to 50+ locations including arm bands, patient headers, labels, and reports. From March 2019 to March 2021, SOGI information was documented for 32.3% of 464 795 patients seen in primary and specialty care clinics. SOGI follow-up alerts for patients potentially requiring attention to LGBTQ+-related clinical needs were generated in 3691 patient encounters and clinicians documented further SOGI information in 12.6% cases. Although Geisinger does not have a patient satisfaction survey targeted to the LGBTQ+ community, the organization has received positive feedback from the LGBTQ+ community through its Diversity & Inclusion advocacy office and the LGBTQ+ employee resource group.

DISCUSSION

Dr. King, Jr¹⁷ described injustice in health as “the most shocking and the most inhuman” of all the forms of inequality. An increased focus on health equity requires organizations to establish a comprehensive data collection program for SOGI, race, ethnicity, preferred language, veteran status, and other information. The Geisinger experience showed that organizations may not be successful simply by implementing a technical solution to add these data elements to the EHR and declaring the task complete. As a starting point, organizations must ensure that staff understand why they are asking questions and have the tools needed to respectfully discuss issues related to diversity and inclusion.

Technical implementation

Geisinger’s implementation used standard data values and documentation forms in its EHR. Due to the lack of national standards, many health systems are adopting recommendations from their EHR vendors or coming up with their own. The lack of standards makes it difficult for data such as gender identity, birth sex, correct name, or pronouns to be exchanged reliably among systems. The lack of standards also makes it difficult to benchmark performance in data collection and use. The result is that even though individuals may provide information, and have it stored accurately in one system, it may not always be used to provide respectful, inclusive services across the continuum of care.

Data collection methods

Geisinger’s initial approach to collecting SOGI information relied on face-to-face discussions during clinic encounters. Several studies have reported self-reported SOGI information—for example, via questionnaire—has high satisfaction for most patients.¹⁸ The EQUALITY study showed patient self-reported collection has higher sexual and gender minority (SGM) patient satisfaction and non-SGM patients were equally comfortable with this approach.¹⁹ A recent study recommended integrating SOGI questions alongside other demographics information, such as race/ethnicity and employment, as this helps normalize the information gathering.¹⁸

As a next step, Geisinger is developing a patient self-reporting questionnaire which will be available via Geisinger’s patient portal and via tablet and touch-screen technology in a private health-care setting. Geisinger’s implementation focuses on an “About Me” questionnaire and includes questions about Race, Ethnicity, Preferred Language, Veteran Status, Gender Identity, Birth Sex, Sexual Orientation, and Pronouns. Discussions are ongoing about how best to collect these data elements and social determinants of health questions such as food insecurity. The expectation is that this About Me questionnaire will help capture SOGI information where the current face-to-face process is unsuccessful.

Discussing sensitive topics

Prior to training, some staff reported reluctance asking SOGI-related questions, often suggesting that a discussion might make patients uncomfortable. After training demonstrating how not to ask, followed by how to appropriately ask sensitive questions, staff concerns have diminished. Geisinger’s experience mirrors a study by Bjarnadottir and colleagues,²⁰ who found that in most cases, patients were willing to answer routine questions about their sexual orientation in the health-care setting and perceived them as important questions to answer.

Education and awareness

Ongoing education is important to help staff become more sensitive to the health-care needs of the LGBTQ+ community. Being located in a traditionally conservative, rural area, this was one of Geisinger’s biggest challenges. Implementing a robust educational program may be a challenge for organizations already overwhelmed with initiatives, but its importance cannot be overstated. Because clinical and nonclinical staff create the patient experience, they must be prepared to embrace diversity and inclusion. No matter the setting, Geisinger provides training on LGBTQ+ terminology and disparities, and the crucial importance of appropriately using preferred names and pronouns. Staff should be taught the value of apologizing when a mistake is made. Most importantly, staff need opportunities to practice sensitive conversations so that they can interact with all patients with grace and understanding.

CONCLUSION

Without accurate data to assess disparities and to support clinical decision-making, LGBTQ+ communities will continue to be vulnerable to health inequities and subject to suboptimal healthcare. Creating a technical solution to collect SOGI information is just one part of a larger program for promoting health equity. Organizations must create a culture in which staff and patients understand the importance of the topic, assess how to sensitively ask questions, and determine how to meaningfully use the information across the continuum of care. All this may be beneficially packaged with services such as referral networks, LGBTQ+ patient navigators, and gender medicine clinics. Finally, collaboration with LGBTQ+ interest groups will communicate that an organization is serious about providing compassionate, respectful, and equitable care.

Geisinger came to appreciate that providing respectful, high-quality care to the LGBTQ+ community must not be framed as a “one-and-done” initiative; it must become deeply engrained in the hearts and minds of everyone involved.

AUTHOR CONTRIBUTIONS

All authors have appropriately contributed to this manuscript.

CONFLICT OF INTEREST STATEMENT

None declared.

DATA AVAILABILITY

The data underlying this article cannot be shared publicly due to the privacy of individuals that participated in the study. The data will be shared on reasonable request to the corresponding author.