HIM Challenges: Quality Data Reduce Disparities for LGBT Patients
By Julie Pursley Dooling, MSHI, RHIA, CHDA, FAHIMA, and Megan Pruente, RHIA
For The Record
Vol. 29 No. 7 P. 8
The lesbian, gay, bisexual, and transgender (LGBT) patient population has specific identification and documentation needs that are not commonplace in today's mainstream health care workflows. There is a general lack of standards when capturing sexual orientation and gender identity (SO/GI) throughout the patient experience. It starts at patient registration and cascades throughout the visit or encounter in associated clinical documentation. The impacts are seen in both the legal medical record documentation and the systems receiving data downstream—best-in-KLAS systems for specialty care, public health, registries, and more.
SO/GI data can greatly affect treatment plans, particularly for individuals who identify as transgender. Capturing standardized SO/GI data elements in an electronic environment is the beginning of enabling the provision of personalized, proactive care for LGBT patients in a private and secure manner.
Historically, and still today, the LGBT patient population faces issues with discrimination and social stigmas. To combat these injustices, several initiatives have aimed to improve the health of this population. These include data collection requirements from the Health Resources and Services Administration (HRSA) and the Office of the National Coordinator for Health Information Technology (ONC).
The March 2016 Program Assistance Letter from HRSA created a sense of urgency among the agency's 1,375 federally qualified health centers, which now had to find ways to reduce health disparities and provide culturally competent care for 24 million LGBT patients. The letter requires SO/GI data to be collected in the Uniform Data System and establishes guidelines in an effort to provide better, more efficient, and higher quality care for the LGBT community.
The ONC's 2015 edition of the HIT certification program requirements, published March 30, 2015, includes guidance on recording, changing, and accessing structured SO/GI data. It's important to note that while this enables users to collect SO/GI data points, doing so is not a documentation requirement, and the new data fields are not stored in most master patient indexes (MPIs). Capturing SO/GI data in an MPI not only improves patient matching and identification but also can aid in better data sharing across multiple platforms, such as health information exchanges, where a significant volume of LGBT patient information is disparate, duplicative, or missing because of poor data quality.
Quality of Care
Ultimately, SO/GI data must be accurately captured and integrated into EHRs. These data points will aid in arming clinicians with the information they need to significantly impact their LGBT patients' clinical experience and care outcomes.
In many organizations, HIM professionals are working with their clinician partners to create new questionnaires and workflows to capture the necessary SO/GI information. Initial capture of this sensitive information is recommended during the clinical encounter; however, steps also must be taken to capture patient demographic data in the MPI.
When electronic systems fail to properly identify patients, there are significant patient safety and data quality concerns that not only endanger patients with the potential for severe health conditions but also limit organizations from achieving quality performance and compliance.
It is well known that MPIs are fraught with patient identity errors. For example, a midsized health care facility may have an average duplicate error rate of 8% to 14%. The capture of new or modified SO/GI data elements in the MPI will need to be carefully constructed and include assistance from standard development organizations. Currently, most MPIs capture only male, female, and unknown, and EHRs use "gender" and "sex" interchangeably. Because sexual orientation and gender identity have different meanings, separate field values for both gender and sex should be considered as a future enhancement.
The National LGBT Health Education Center (a program of the Fenway Institute) advises the following questions be posed during a patient visit (preferably during the clinical encounter):
Do you think of yourself as:
• straight or heterosexual;
• lesbian, gay, or homosexual;
• something else;
• don't know; or
• choose not to disclose.
What is your current gender identity?:
• transgender male/trans man/female to male;
• transgender female/trans woman/male to female;
• genderqueer (neither exclusively male nor female);
• additional gender category/other, please specify; or
• choose not to disclose.
What sex were you assigned at birth on your original birth certificate?
• female; or
• choose not to disclose.
To reduce the risk of inaccurately documenting patient data, HRSA's Program Assistance Letter outlines key data elements patients can select to accurately self-identify. These include selections that extend beyond male and female to include options such as transgender male/female to male and transgender female/male to female. Documentation of patients' aliases, preferred names and pronouns, and the progress of their transitions, are vital to ensure proactive and sensitive treatments.
The challenge, however, is that current IT standards are not capturing these data, which ultimately leads to increased health disparities among LGBT populations. EHR vendors and provider organizations alike should focus their LGBT data initiatives on two key areas: patient safety and data integrity.
Health facilities must collaborate with EHR vendors to develop an optimal structure of questions and decision support that addresses the specific treatment needs of LGBT patients. Collecting SO/GI data is necessary to enable providers the ability to order specific testing. Such testing may include breast cancer exams for transgender male patients who were born as female. Providers may also order additional health care services, such as sexually transmitted disease screenings and risk assessments, for LGBT patients.
Collecting SO/GI data in EHRs instead of in nonstandardized notes prevents health risks such as HIV and AIDS that are more common in certain sectors of the LGBT community. With this information, clinicians have the foresight to recognize and proactively manage patient safety issues.
Clinical information and resources that address issues such as sexual safety precautions, alcohol and drug abuse prevention, and behavioral health concerns can be distributed to provide quality care and involve patients in their health care. It is imperative that this information is in a standardized format within the EHR. Considerations include minimum necessary laws for treatment, payment, and operations to protect privacy concerns (possibly adding this class of patients to the same confidentiality standards as alcohol and drug abuse and behavioral health patients) to avoid preventable illnesses and mortalities, as well as provide quality patient care in a welcoming and accepting professional environment.
Health information data integrity solutions aid in the prevention of duplicate patient records. However, many providers lack the proper technology, standards, and support to efficiently aggregate and store information in their EHR, resulting in data integrity issues. This can be a significant area of concern with transgender patients, who may identify with preferred names and pronouns that differ from those listed on health insurance policies, birth certificates, and driver's licenses. These documents might also change throughout the stages of their transitions, which reinforces the need for continual updates. If health care facilities neglect to collect this information, patient dissatisfaction may increase, treatment may be delayed, and care may suffer.
Conversely, by improving data-capture processes for LGBT patients through a strong information governance program, patients receive the highest quality of care while facilities reduce liabilities, health disparities, and expenditures.
— Julie Pursley Dooling, MSHI, RHIA, CHDA, FAHIMA, is vice president of national sales at Just Associates.
— Megan Pruente, RHIA, is identity manager team lead at Just Associates.