Language Access to Language Justice: Strategies to Transform Pediatric Research and Health Care

People who use languages other than English (LOE)1 comprise around 8% of the US population2 and experience health inequities.3 In pediatrics, language-related inequities include lower health care quality and less access to care,4 increased adverse medical events,5 and higher readmission rates.6 Federal policies, including the Culturally and Linguistically Appropriate Services (CLAS) Standards and Section 1557 of the Affordable Care Act outline, as a civil right, the provision of language services, including interpreting, translation, and access to qualified bilingual or multilingual (hereafter described as multilingual) practitioners.7 Despite these long-standing policies, people who use LOE have inconsistent access to interpreting during health care visits, particularly during interactions with non–practitioner-allied health care staff (eg, pharmacist, registration).8 Additionally, the emergence of telemedicine and patient portals has led to increased opportunity for written communication. Although helpful to some, these innovations have created new barriers when hospital and research systems lack resources to provide access to written documents.9,10 Although research is a fundamental component of pediatric academic health care and often interwoven with clinical care, people who use LOE are largely excluded from pediatric research11,12; when included, they may have a suboptimal experience.13In this article, we describe a novel, systems-level approach to promote health equity. Note that although this approach was developed for people who use spoken, signed, and written LOE, these principles also apply to people who are deaf and hard of hearing who use signed languages. Therefore, we always use the term “spoken and signed.” However, we also recognize that there are unique best practices for using signed interpretation. Future work should collaborate with people who are deaf and hard of hearing to adapt and refine the checklists described below.Language justice is a systems-level transformative approach to ensure a seamless language experience for pediatric patients and caregivers who use LOE. We define language justice as promoting the right for individuals to communicate in their preferred language to better address power imbalances and advance equity and social justice.3,14 Language justice differs from language access, with the latter defined more narrowly as language services being available in clinical and research settings. Core principles of language justice include (1) shifting the responsibility of providing linguistically equitable services from the patient to the health care or research system; (2) providing language services throughout the health care or research experience; (3) convening a multidisciplinary language team to develop and implement processes; and (4) using strengths-based, affirming language, which celebrates the beauty of linguistically diverse communities and values all languages equitably (Table 1). The language justice framework robustly aligns with bioethical principles applied to clinical care and research, including respect for persons (ie, limiting risks for coercion and assuring that participants can provide informed consent), beneficence (ie, minimizing psychological harm that can occur with power imbalance related to language dominance), and justice (assuring that research knowledge and benefits do not exclude people who use LOE and that people who use LOE can equitably access clinical care).15The use of checklists to improve patient safety and quality has been widely accepted, particularly as a strategy toward shifting culture within academic organizations.16 To support a shift toward a language justice approach, we have created checklists for clinical (Supplemental Material 1) and research (Supplemental Material 2) teams that provide stepwise guidance for implementing language justice strategies. Table 2 includes key definitions related to the distinct roles of interpreting, translation, and qualified multilingual team members discussed in the following paragraphs.We recommend first convening a language team comprising a multidisciplinary group invested in language services. Clinical language teams may include professional interpreters and translators (ie, professionally trained and preferably credentialed by a national certification organization, if a certification exam is available in their language; see Table 2), qualified multilingual clinical staff or researchers (ie, having job-related proficiency in English and another language, assessed through an organizational qualification process), health informaticists, and practice managers. Research language teams may include regulatory experts, qualified multilingual research staff and investigators, and professional interpreters and translators. Language teams should include patients and caregivers who use LOE with attention to ensuring that their voices are centered.After convening the language team, we recommend a comprehensive review of the language-related policies that exist within a health care or research system. Next, we recommend experience mapping, where the team considers and describes all interactions a patient or caregiver may have during a clinical workflow or research study (Figures 1 and 2 provide examples). Experience mapping can help identify and address gaps in language services across the care spectrum.After developing the experience map, we recommend reviewing spoken, signed, and written communication separately. For spoken and signed communication, consider how to provide a qualified multilingual team member or a professional interpreter. A robust body of literature has shown that patient outcomes are improved when a professional interpreter is available17,18 and that involving family members or staff as interpreters (ie, ad hoc interpreter; see Table 2) is not appropriate.19 The language team can also help determine whether spoken or signed communication will be better served through consecutive or simultaneous modes of interpreting (Table 2).Multilingual practitioners (eg, someone who fluently uses English and the non-English language) are also acceptable for use in patient care; however, it is critical for any multilingual individual to undergo qualification testing to assess their language capabilities in medical and research settings.20 Since there are no national professional certification options for multilingual health care practitioners or researchers, qualification, where it exists, typically occurs at the organizational level. Additionally, qualified multilingual staff are typically qualified to communicate directly with people who use LOE, not to interpret on others’ behalf. Commonly cited challenges to providing adequate language services, including lack of time, access, and knowledge,10,21,22 can be mitigated with a proactive and comprehensive language justice strategy.Core to a language justice approach is ensuring equitable access to spoken, signed, and written communication. Written communication is common in both research (eg, consent forms, recruitment materials, surveys) and clinical care (eg, questionnaires, text message reminders, patient education, discharge instructions). We recommend that language teams use the experience map to determine when written communication is used and how translation services might be applied. Translation services can be time-consuming and costly, with limited availability of real-time translation options.9 This barrier has led to underuse of translation in health care and research settings. The appearance and rapid evolution of artificial intelligence presents new possibilities for quick, inexpensive translation, but accuracy varies depending on the language and information translated.23 Emerging technologies must therefore be used with caution in accordance with institutional policies and in tandem with human translators as organizations define how this technology can advance equity while maintaining quality and safety.24,25 Written communication must also be made accessible through images and multimedia support for those who are preliterate in their language (ie, do not read). Some potential examples are using infographics or instructional videos in the consent process.Next, it is important to plan for universal assessment and documentation of language preference, without which patients or caregivers who use LOE can be misidentified until they are already partway through a clinical or research workflow. We recommend implementing a reliable, universal process to assess language preferences of all patients or participants at the beginning of the workflow. In the pediatric setting, language teams must consider that language preferences may differ within a family, requiring assessment and documentation for each caregiver and the child.26 Because people may also have different preferences regarding spoken, signed, and written language, language preference assessment should include all types of communication. Language preferences may change over time, so documentation should be verified periodically. Electronic medical record data on language preferences in pediatrics typically do not include the nuance described previously, leading to possible inaccuracy.27,28 We recommend working with informaticists to include, in the electronic health record, language preference (spoken, signed, and written) for the child (patient) and all caregivers and developing a workflow for periodic reassessment of language preferences.Our proposed checklists provide tools for integrating a language justice approach into clinical or research workflows. However, institutional- and policy-level changes are also needed. Institutions can develop comprehensive language centers or programs, which provide guidance to clinical and research teams on using language justice checklists to optimize their workflows, offer supervision and education for interpreters and translators, set multilingual qualification criteria for practitioners and staff, and offer training for medical staff and researchers. One example is the Program for Language Equity at Boston Children’s Hospital, which works with the hospital’s Language Services Department and focuses on integrating language equity into research, clinical care, education, and advocacy. Clinical and Translational Science Institutes, which provide support, resources, and services for researchers conducting clinical and translational science, can serve as a hub for research-related language justice services.29 Clinical and Translational Science Institutes or institutional language centers can also potentially provide research pilot funding for teams who include participants who use LOE, which can support participant incentives and cover translation and interpreting costs.From a policy perspective, Medicaid reimbursement for interpreter and translation services is essential. Interpreter services are not uniformly reimbursable through Medicaid across states, and, to our knowledge, translation services are not reimbursable in any state despite federal requirements.30 Protecting Medicaid funding is particularly critical in the current policy environment and is essential for promoting language justice. Further advocacy is also needed among payors, including commercial insurance, to reimburse for language services and to implement billing systems that allow practitioners to report extra time with a patient due to use of interpreter services. Finally, cross-sector collaborations between health care/research settings and other systems such as legal, education, and social services are needed to ensure that people who use LOE can access all communication during institutional interactions. These checklists may also be adapted for other settings.Language justice is a systems-level approach with the goal of transforming pediatric health care and research to become inclusive and affirming toward people who use LOE. Use of checklists can facilitate implementation of a language justice approach to advance equity in pediatric clinical care and research.We would like to thank Casey Lion, MD, and Lisa DeCamp, MD, for reviewing and providing feedback on the checklists.