By Sally Deming, RHIT; Julie Dooling, MSHI, RHIA, CHDA; Lesley Kadlec, MA, RHIA, CHDA; Annessa Kirby; and Megan Munns, RHIA
The 2015 Supreme Court decision requiring states to license a marriage between two people of the same sex and to recognize same sex marriage across state lines has widespread implications for health records management.1
This article will describe these implications and issues of importance to health information management (HIM) professionals in addressing some unique needs of the lesbian, gay, bisexual, and transgender (LGBT) population.
HIM’s Role in Data Collection
Beginning or enhancing the collection of demographic, social, and clinical information about a provider’s LGBT patient population is an important initiative that should be on all HIM professionals’ to-do list. Developing and refining healthcare processes, culture, and systems to include key data elements for these patients is critical to ensuring patient care providers have important information to effectively treat patients and interact respectfully.
Traditional health information technology (HIT) barriers still need to be addressed. For example, the identification of gender can be an issue. Healthcare documentation systems typically contain gender selection of male, female, “unknown,” indeterminate, or “other” on forms or electronic health records (EHRs). Gender as a data component often helps determine which tools are available (such as templates) to help providers treat a patient and order ancillary testing. Gender-related data is also sent via interfaces to ancillary systems, and then those systems use gender to report acceptable result ranges to providers.
Utilizing “other” and “unknown” options for gender can be offensive to patients. Patients know their gender even if it is not recognized by technology. One way to consider addressing this is to expand the gender pronoun list. The term “unknown” does have its place in the record, such as in situations with trauma patients or newborns that require surgery immediately after birth. For example, some infants may require immediate surgery after birth, but orders may need to be placed in advance of the delivery. So orders placed for the newborn prior to delivery may need to indicate the gender as “unknown.”
Other examples of barriers or potential issues include the following. Collecting a patient’s next of kin data, such as parents, spouses, etc., is important for communication with key family members. Fields to collect these important data elements must have flexibility to accurately identify the relationship.2 For example, husband/wife/spouse, mother/father, and marital status are fields that in today’s systems may not be inclusive of LGBT patients. System designers need to be mindful of the need for additional responses when building a structured format to capture this information. HIM professionals should work with their vendor to ensure their systems are updated to include options for the LGBT population. HIM professionals should also inquire about retrofitting these new data elements into prior versions once they become available.
Patients undergoing a gender transition should have the flexibility to identify their preferred gender throughout the transition process. Healthcare and billing systems must provide some flexibility in allowing for “sex assigned at birth” and “preferred gender,” which can change throughout the process.
A patient’s preferred pronoun and preferred name are also key data fields that assist with interactions between patient and provider. Preferred pronouns may include he, she, they, etc. Preferred name is the name the person prefers to be called, such as “Caitlyn” instead of “Bruce” in the recent famous transgender case of Caitlyn Jenner. Furthermore, a history of the patient’s historical names is also important for patient matching and sharing data across multiple systems. Flexibility for documenting a patient’s preferred name and preferred pronoun in medical record documentation must be made available within EHRs for continuity of care and communication with the patient (i.e., appointment reminder notices, health update reminders, etc.). The purpose of a health record is to build the patient’s story and flexibility is needed. Guidance is needed to determine what is acceptable, and consistent terminology is needed so information can be mapped across systems.
Patient Safety Considerations
Patient safety issues must be addressed. For example, it’s possible that a transgender patient could present for care without first making their provider aware of their gender status. This can be problematic as gender often drives template tools designed specifically for male or female patients, and may drive alerts or suggestions for diagnostic testing in EHRs. If a patient doesn’t share their transgender status, the provider may not be able to order a specific test (i.e., a PSA for a transgender female patient or breast cancer exams for transgender males who were previously female) or easily document their findings from a specific exam (such as a gynecological exam for a transgender male patient).
Providers who are not aware of a patient’s gender status may not have the opportunity to ensure comprehensive continuity of care to accurately treat the patient. If a provider is unaware a patient is transgender, the provider may miss the opportunity to offer specific screenings to help support the patient either medically or emotionally. Lab reference ranges may have abnormal results because gender is listed incorrectly. For example, pulmonary function test (PFT) standard ranges for results are based on gender, therefore possibly returning abnormal results in transgender patients.
Additionally, HIM professionals must confront challenges with patient engagement. LGBT patients, who are often subject to negative comments and actions regarding their sexuality, may be hesitant to share their status due to a prior negative experience or generalized fears. In order for patients to have confidence in the healthcare organization, processes and systems must be expanded to be supportive and offer a level of assurance and confidentiality. Healthcare organizations need to have processes that afford LGBT patients a level of assurance that their information is private and secure. LGBT patients need to know they can share it and it will not be scrutinized and/or discriminated against. Workforce and patient education on sensitivities to transgender patients is changing how we manage medical care, including what types of medical equipment are used.
Healthcare facilities are faced with challenges related to room assignments for transgender patients and how to handle questions from roommates about sharing bathrooms. There is a need for culture change. Workforce education regarding LGBT patients must be approached from a cultural and clinical perspective. This requires a collaborative approach and coordination of care. For example, a patient’s preferences regarding personal pronouns and terminology should be observed in all care settings, including post-acute care and nursing homes.
A patient’s LGBT status must be available to clinicians when needed and not inappropriately shared. It is critical that the patient’s confidentiality is maintained, their clinical information shared appropriately as needed, and that their unrelated gender identity or demographic information not be inadvertently shared. Take, for example, a case in which a transgender woman—that is, a person who was assigned male at birth but transitioned to female—requires post-acute care at a nursing home for rehabilitation. If the fact that the person is transgender isn’t communicated from one care setting to the other, this presents a challenge to the facility that is doing room planning. Policies and procedures should be outlined to address requirements for the unique privacy protections for this population.
A patient’s medical record is important to their past and future healthcare needs. If a patient requests that their health records be amended to reflect their preferred gender and pronouns, HIM professionals should be able to facilitate the request and update this information going forward.
There needs to be assurance that LGBT patients will receive safe, confidential, and quality healthcare. HIM professionals must begin to identify any issues with technology, policies, and procedures, and work towards alleviating any potential unintended consequences as a result of poorly designed data capture, workflows, and technology.
To learn more about this subject, see:
- The Fenway Institute’s National LGBT Health Education Center: www.lgbthealtheducation.org
- “Electronic medical records and the transgender patient: Recommendations from the World Professional Association for Transgender Health EMR Working Group,” in the Journal of the American Medical Informatics Association: http://bit.ly/1ShBINe
- New York State Department of Health LGBT Health Resources: www.health.ny.gov/diseases/aids/consumers/lgbt/
- “Do Ask, Do Tell: High Levels of Acceptability by Patients of Routine Collection of Sexual Orientation and Gender Identity Data in Four Diverse American Community Health Centers,” in the journal PLOS: http://bit.ly/1NykDIL
1 Supreme Court of the United States. Obergefell et al. v. Hodges, Director, Ohio Department of Health et al. No. 14-556. June 26, 2015. www.supremecourt.gov/opinions/14pdf/14-556_3204.pdf.
2 Lusk, Katherine et al. “Patient Matching in Health Information Exchanges.” Perspectives in Health Information Management. December 2014. http://perspectives.ahima.org/wp-content/uploads/2014/12/PatientMatchinginHIEs.pdf.
Sally Deming (Sally_Deming@URMC.Rochester.edu) is director, data integrity, at the University of Rochester Medical Center. Julie Dooling (email@example.com) is a senior consultant at Just Associates, Inc. Lesley Kadlec (Lesley.Kadlec@ahima.org) is a director of HIM practice excellence, and Annessa Kirby (Annessa.Kirby@ahima.org) is manager, practice councils, at AHIMA. Megan Munns (firstname.lastname@example.org) is the identity manager at Just Associates, Inc.
Deming, Sally; Dooling, Julie A; Kadlec, Lesley; Kirby, Annessa; Munns, Megan.
"Treating LGBT Status as a Patient Safety Issue"
Journal of AHIMA