Bringing Cultural Competency to the EHR: Lessons Learned Providing Respectful, Quality Care to the LGBTQ Community

Abstract

The lesbian, gay, bisexual, transgender, queer (LGBTQ) community is vulnerable to healthcare disparities. Many healthcare organizations are contemplating efforts to collect sexual orientation and gender identity in the electronic health record (EHR), with a goal of providing more respectful, inclusive, high-quality care to their LGBTQ patients. There are significant human and technical barriers that must be overcome to make these efforts successful. Based on our four-year experience at Geisinger (an integrated health system located in a rural, generally conservative area), we provide insights to overcome challenges in two critical areas: 1) enabling the EHR to collect and use information to support the healthcare needs of LGBTQ patients, and 2) building a culture of awareness and caring, empowering members of the healthcare team to break down barriers of misunderstanding and mistrust.

INTRODUCTION

The LGBTQ community is vulnerable to healthcare disparities. Recent studies have reported that more than 50% of the LGBTQ population have experienced some form of healthcare discrimination¹, 28% of transgender and gender non-conforming people have postponed medical care when sick or injured due to discrimination and disrespect¹, and nearly 25% of respondents reported not seeking health care in the past year due to fear of mistreatment¹. The result is lower rates of mammography² and pap smear² screenings, and higher rates of substance abuse^3,4, smoking⁵, unhealthy weight control/perception⁶, HIV, and other sexually transmitted infections among the LGBTQ community^7,8.

For over a century, Geisinger has provided high-quality care to our community and aspired to treat all patients with dignity and respect. In 2017, we recognized that our clinicians and support staff were not equipped with the knowledge or resources they needed to provide optimal care to the LGBTQ community. In response, we launched several initiatives to improve our capacity and strengthen our commitment to reducing healthcare disparities faced by the LGBTQ community. Understanding that these challenges cannot be overcome with "a simple fix," we adopted a multi-prong approach, emphasizing policy development, staff training, and patient education, in addition to modifications and enhancements to the EHR.

Lessons from our experience complement and build upon the recommendations outlined in Grasso and colleagues' "Planning and implementing sexual orientation and gender identity data collection in electronic health records"⁹. In particular, we provide pragmatic examples of what succeeded and failed with respect to technology and process, and we present our attempt to overcome cultural challenges that the healthcare and informatics communities may encounter when providing care to LGBTQ patients.

METHODS

To provide respectful, inclusive, high-quality care to LGBTQ patients, we focused on addressing three areas:

1. Patients may feel unsafe, judged, or be concerned about privacy and rights;

2. Both clinical and non-clinical staff may be confused about LGBTQ concepts and terminology or feel uncomfortable asking sensitive questions; and

3. The EHR lacked the required data elements to capture relevant information as well as decision support tools to put that information to use.

Helping Patients Feel Safe, Free from Judgment, and Protected

Our goal was to create an inclusive, respectful, welcoming environment for patients. The Human Rights Campaign Foundations' Healthcare Equality Index (HEI) identifies organizations providing equitable and inclusive care for LGBTQ patients and their families, and specifically suggests that non-discrimination policies consider sexual orientation and gender identity.¹⁰ Using recommendations from HEI, Geisinger revised its patient non-discrimination policy to be LGBTQ-inclusive, specifying sexual orientation and gender identity and revising the visitation policy to include the patient's visitor of choice (for example, a domestic partner). These policy changes were implemented and reinforced with transparent communication to patients and staff, with a focus on educating all patients regarding what questions will be asked, why they will be asked, and how the information gathered will be used and protected. Figure 1 shows examples of materials developed to help LGBTQ patients understand Geisinger's efforts to collect information related to sexual orientation and gender identity, and to provide more inclusive care.

Figure 1. Examples of Geisinger's informational handouts and web resources for patients.^11,12.

Educating Clinicians and Non-clinical Staff

We developed a multipronged approach to educating our workforce (Table 1). Clinician training focused on understanding 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. As with all staff members, clinicians require cultural competency training. A study of first-year medical students showed that 80% expressed implicit bias against gay and lesbian people, and 50% expressed explicit bias¹³. We sought to overcome bias by addressing it directly and repeatedly, including use of case-based learning in large-and small-group settings.

Table 1. Types of training programs to help staff develop awareness and sensitivity regarding LGBTQ-related healthcare issues.

Cultural Competency & Unconscious Bias training	All staff who interact with patients including leadership, providers, non-providers, dietary, environmental services, etc. Training should include: terminology, culture, disparities, inclusion practice explaining to the patient what will be collected, why, how it will be used, and privacy of the information practice asking sensitive questions how to apologize when mistakes are made
Workflow training	All clinical staff who collect information Training should include: Procedure to collect information Best practice alerts & how information is used in Clinical Decision Support Chart corrections

To provide for the unique healthcare needs of LGBTQ individuals, we developed a specialty referral network which encompasses specialty services in endocrinology, urology, and mental health. To assist healthcare providers, we are also developing a Gender Medicine e-consult service with subject-matter experts to support and enhance clinical care. All providers also have access to nationally recognized resources for LGBTQ clinical education via e-links through our corporate intranet.

Major efforts were undertaken to educate all staff, including personnel in Registration, Environmental Services, and Food Services departments, on the needs and rights of the LGBTQ community. We focused on helping staff first understand how they are supported as individuals and employees, and then concentrated on how staff are expected to support patients of all backgrounds.

After institutional policies were changed to address sexual orientation and gender identity, we discovered that communication and education on these policies—for both staff and patients—was critical. Key challenges were creating effective programs and setting aside time for training staff on cultural competency. We found success in developing interactive opportunities for staff to practice what they learned didactically. We provided hands-on experience for all staff to understand how to correctly use names and pronouns and how to apologize when mistakes are made.

Modifying the EHR: Data Elements

EHRs have historically not included necessary fields to adequately capture SOGI and other LGBTQ-related information. Some commercial EHR vendors are now providing updates to address this gap. In our experience, we found it important to create discrete fields to document: Gender Identity, Sex Assigned at Birth, Sexual Orientation, Family Inclusive Values for Relationships, and Correct Name & Pronouns (Table 2).

Table 2. Discrete data elements that should be collected in the EHR to support inclusive care.

Data Element	Description
Legal Sex	Administrative or legal sex Ex: Male, Female, Unknown, X, Nonbinary
Gender Identity	The gender with which a person identifies Ex: Female, Male, Transgender Female/Male-to-Female, Transgender Male/Female-to-Male, Other, Choose not to disclose
Birth Sex	Sex observed at birth as recorded on the birth certificate Ex: Female, Male, Unknown, Not recorded, Uncertain, Choose not to disclose
Affirmation History &	Medical steps taken to transition/affirm gender
Organ Inventory	Ex: Steps taken, future plans, organs present, organs constructed, enhanced
Pronoun	Correct pronouns Ex: he/him/his, she/her/hers, they/them/theirs, ze/zem/zir
Name	Correct first name and correct last name. Patients may not have taken or completed steps to change their legal name.
Marital Status	Add LGBTQ family-inclusive options Ex: Domestic Partnership
Emergency Contact	Add LGBTQ family-inclusive options Ex: Domestic Partnership, two mothers, two fathers

Modifying the EHR: Clinical Decision Support

To be effective, the information collected in Table 2 must be incorporated into clinical decision support tools within the EHR. In our implementation, significant changes were required to workflows for ordering and reviewing diagnostic tests, blood bank ordering, managing medications, billing, and quality reporting. Table 3 lists considerations for reviewing EHR clinical decision support for health maintenance and medication.

Table 3. Considerations for clinical decision support.

Decision Support	Consideration
Alert identifying missing/inconsistent documentation of Legal Sex	When there are inconsistencies among Legal Sex, Sex Assigned at Birth, and Gender Identity, alert providers that there is additional information that should be reviewed.
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	Legal 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.

Modifying the EHR: Data Collection Workflow

In our experience, it was important to define the process by which the organization collected LGBTQ-related information, taking into consideration who will collect it and in what setting. We found that asking these sensitive questions a private setting where a patient feels safe was imperative. Targeted training was necessary to educate staff on understanding their role in data collection and privacy. We used the workflow shown in Figure 2, which was designed to address typical situations where registration areas are lacking in privacy.

Figure 2. Workflow for collecting sexual orientation and gender identity-related information.

RESULTS

Table 5 shows results of training, data collection, and clinical decision support interventions. Geisinger's initiatives to improve care for the LGBTQ population began in 2017. By March 2020, over 7,000 staff members had completed in-person Unconscious Bias trainings; 2,000 had completed in-person Safe Zone trainings, and 19,800 employees had completed an online Cultural Awareness course.

Table 5. Results of training, data collection, and clinical decision support interventions from March 2019 through February 2020.

Training	Data Collection	Decision Support
Unconscious Bias training (in person): provided to over 7,000 staff including physicians, nursing & patient access representatives Safe Zone training (in person): provided to over 2,000 staff Cultural Awareness course (on-line): 19,800 staff completed the initial course	Collected on 78,836 patients in Primary Care, Urgent Care and some specialty clinics. Average collection rate is 36% Collection rate at Student Health Centers is 91%	Fired 1,355+ BPAs on mismatches between Sex, Gender Identity and Sex Assigned at Birth. This resulted in 181 instances of clinician re-direction to an activity in the EHR to review and/or enter clarifying gender identity data.

Sexual orientation and gender identity information has been collected for 78,836 patients—approximately 36% of those visiting our Community Medicine Clinics. Considerable variability exists across clinics in the rate of information collection, with rates above 90% at student health centers, but far lower in clinics specializing in geriatric care.

Between March 2019 and February 2020, 1,355 EHR alerts were generated based on mismatches between Sex, Gender Identity, and Sex Assigned at Birth. In 181 cases, clinicians accepted the alert and were re-directed to an activity in the EHR where they could review and/or enter clarifying information.

DISCUSSION

The LGBTQ community faces notable barriers to receiving high-quality, respectful care. Addressing these barriers requires sensitive outreach to patients, innovative educational programs for clinical and operations staff, and significant changes to structures and workflows in the EHR. We spent more than one year developing cultural competency programs, redesigning policies, and adapting the EHR to include necessary LGBTQ-related care elements. To date, over 78,000 patients have responded to LGBTQ-related questions and we believe they are receiving safer, more inclusive care as a result.

Leadership and Governance

The foundation of success for our program was to create a leadership group with expertise and representation from all areas of the organization, including: executive leadership, operations, legal, revenue management, patient registration, health information management, and information technology. Perhaps most critical was the inclusion of strong allies from the LGBTQ community, who provided knowledge and perspective to those new to the journey. These individuals can serve as mentors for the larger team and encourage continuous improvement and monitoring of progress. We strongly recommend a similar leadership/governance structure to organizations undertaking similar initiatives.

Technical Implementation

A key component in a program to improve care for the LGBTQ community is modifying the EHR to include the necessary LGBTQ-related data elements and workflows. Collecting sexual orientation and gender identity information is not enough; organizations must determine how to effectively use the information once it is collected. Thoughtfully implemented clinical decision support tools will require accurate information in terms of Legal Sex, Sex Assigned At Birth, Gender Identity, Affirmation/Transition Information, and Organ Inventories. Recommendations for health maintenance activities for transgender patients should suggest both male and female age-appropriate needs to avoid errors of omission and to allow clinicians to make patient-specific decisions. Finally, correct names and pronoun usage when addressing the patient, verbally and in clinical and administrative documentation, foster a respectful, accepting culture. It is essential that organizations communicate with patients regarding the use and potential sharing of sensitive information, and it goes without saying that inappropriate information use/sharing can be catastrophic for establishing trust of LGBTQ patients.

Despite major advancements in health information technology standards, we face ongoing interoperability challenges with respect to LGBTQ-related data. Currently, standardized values for Legal Sex, Gender Identity, and Sex Assigned at Birth are not widely adopted. This issue affects healthcare delivery organizations in ways that are both obvious and subtle. For example, many states in the U.S. are changing drivers' licenses—which are used as identification by many patients—to incorporate nonbinary values; however, a standard method to represent "non-binary" has not been agreed upon. Some states use an "X", while others spell out "Nonbinary." Additional work in this area is warranted, though the healthcare community cannot sit idly waiting for others to solve this problem.

Data Driven Approach

Geisinger's cultural competency approach to LGBTQ care is driven by data. In an area without standards, it is critical to apply data to plan approaches, test potential solutions, carefully study results and adeptly make necessary changes. Geisinger is continually watching to understand how government agencies and vendors standardize the collection of data elements. In Geisinger's Pennsylvania market, the governor has created a COVID-19 Response Task Force on Health Disparity. In addition to race and ethnicity, healthcare providers are mandated to provide sexual orientation and gender identity data. While we celebrate this data-driven initiative, it emphasizes the need for standards across the host of electronic systems and vendors collecting and using the data to provide clinical services.

A data driven approach is also critical to understand successes and failures on approaches to collect patient's information and then again how to actively use the information once it's been collected. Geisinger continually monitors collection rates by clinic and provides education as needed. The data validates unmet health care needs in our sizeable LGBTW community. We 're able to better identify our patient needs and can manage these needs by clinicians who are more familiar and have greater expertise in addressing LGTBQ health care needs. As we move forward, we are looking at methods to use our data to reduce healthcare disparities and close care gaps.

Education and Awareness

Ongoing education is important to help staff become culturally aware and sensitive to the healthcare 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 non-clinical staff create the patient experience, they must be prepared to embrace the LGBTQ community. No matter the setting, we recommend that all staff undergo training on LGBTQ terminology and disparities, generally, and the crucial importance of appropriately using preferred names and pronouns. Staff should be taught the importance 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.

We came to appreciate that providing respectful, high-quality care to the LGBTQ community should not be framed as a "one-and-done" initiative. The importance of on-going monitoring and continuous enhancement of programs cannot be overstated. From the data collection perspective, organizations should ascertain that data are being actively collected and utilized. New staff must be trained, and special attention must be given to those who are uncomfortable with LGBTQ-related topics. There must be continuous efforts to review health information technology vendors and their capacity to exchange LGBTQ-related information. Additionally, organizations should develop a network of educated providers to offer specialty care to patients and expertise within the health system. Finally, special attention must be paid to patient feedback, whether it comes from satisfaction surveys or comments left on social media. This feedback will allow organizations to continually monitor progress and make positive changes.

CONCLUSION

Providing safe, inclusive, respectful care to the LGBTQ community is achievable through an investment in people, process, and technology. Among several regional and national recognitions related to this work, Geisinger is proud to have received the Leadership designation from the Human Rights Campaign, which recognized us for promoting equitable and inclusive care for LGBTQ patients and their families. If Geisinger can do it; so too can other healthcare organizations. While the journey of providing equitable care to their LGBTQ community is filled with challenges, the reasons for undertaking the journey are foundational and inspiring, and central to the mission of providing healthcare.

Figures & Table

Table 4. Domains and activities that may be impacted by LGBTQ-related data collection changes to the EHR.

Domain/Activity	Considerations
Laboratory	What determines male vs female? What will be used for standard reference ranges? If sex is unreliable, can standard values for male and female be reported? What are the requirements for patient identification on labels?
Blood Bank	What determines male vs female? How is Rh factor determined?
Medication	What determines male vs female? What is used for patient identification?
Billing	How are nonbinary values, name and pronouns used? Will the billing company reimburse when there is a mismatch between Legal Sex and Procedure?
Bed Planning	Will rooms be assigned based on legal sex, gender identity, or sex assigned at birth?
Healthcare	Can exchanges incorporate Gender Identity and Sex Assigned at Birth? How will data be
Exchanges	reported and matched?
Quality Reporting	What is needed for the metric? Legal Sex, Gender Identity, or Sex Assigned at Birth?
Notes &	Use patients correct name and pronouns. Use Legal Sex, Gender Identity, or Sex
Documentation	Assigned at Birth as applicable.
Arm Bands &	What is required for positive patient identification? Are Legal Name and Legal Sex
Labels	required? Incorporate Gender Identity, Correct Name and pronouns.
Patient Portals	What can be collected through the Portal? Can a questionnaire be used to initially collect LGBTQ-related information? Can proxies access the information?