We envision a world where individuals with hearing losses are a vital part of shaping and improving our healthcare system.

A culturally competent system where communication is open and direct, health research is inclusive, and discrimination and stigmas are relics of the past.

All domains of health research, from health surveillance, health services, and research on comparative-effectiveness, for many years, has been conducted by hearing researchers focused on racial- and ethnic- hearing populations of interest. Despite efforts among healthcare stakeholders to pursue health equity initiatives and shift towards a patient-centered health system, the effect of health inequities specific to those with hearing losses, individuals at increased risk for chronic conditions and neurodegenerative disorders, has gone mostly unmeasured. As a result, health policy decisions guided by existing research have excluded the unique views and health outcomes reflective of our population. Our goal is to ensure the voices of individuals with hearing losses have a seat at the table in a way that can better inform the development of culturally competent health policies while also improving our understanding of the systemic barriers that negatively impact our lives and have contributed to our health inequities. 

​

Conducting and publishing the research and outcomes data needed for individuals with hearing losses to be healthy is both an ethical and social justice issue. Health interventions, techniques, and services proven to be effective for the hearing population may be more effective for individuals with hearing losses and other disabilities. Unfortunately, traditional health services research and quality-of-life (QoL) measures used to guide decisions that impact access are often derived from hearing populations may not be reflective of outcomes specific to individuals with hearing losses. Further exacerbating these issues is the shortage of policymakers, health services researchers, and other health professionals who have the qualified expertise and experience needed to assess the lived experiences of individuals with hearing losses. Public health and patient-centered outcomes research (PCOR) researchers have a unique opportunity to advance current health equity initiatives by addressing existing data gaps and engaging with individuals with hearing losses to ensure outcomes specific to their lived experiences are being accounted for in research studies, as well as subsequent evidence-based practices and/or clinical practice guidelines .  

 

While opportunities exist to better collaborate and engage individuals with hearing losses, there are several challenges that have historically limited our involvement in research. As mentioned previously, the majority of researchers are hearing individuals with limited training or knowledge in conducting robust research on individuals with hearing losses, particularly among American Sign Language (ASL) users. Effective communication and engagement is essential for robust evidence generation, and individuals with hearing losses are likely to experience increased communication barriers that prohibit their ability to adequately and effectively engage in studies as research participants. For individuals with hearing losses who may need an ASL interpreter, introducing an interpreter to the research process can create additional burdens. Further, the majority of outcomes research on individuals with hearing losses has been limited to early childhood literacy development. Additional research is needed to better understand how comorbidities, chronic conditions and diseases, as well as health interventions uniquely impact individuals with hearing losses and their caregivers compared to the average hearing patient. Conducting this research can further inform the development of culturally competent health policy decisions, value assessments, and clinical practice guidelines.

​

Public health entities and other healthcare stakeholders must work together to engage individuals with hearing losses in order to address inequities in health information access, research, and ultimately, health care delivery. DHC urges evidence generating organizations, such as the Patient-Centered Outcomes Institute (PCORI) and the Agency for Healthcare Research and Quality (AHRQ), as well as other stakeholders such as the Institute for Clinical and Economic Review (ICER), to further expand their patient-centered research and health equity initiatives in a way that better accounts for individuals with hearing losses. Those with hearing loss deserve an equal opportunity to achieve optimal health and access to the high quality interventions based on their unique needs.

​