Public health entities must work together with deaf sign language users to address inequities in health information access
. At a minimum, captions or transcripts should be the standard for all publicly available health information that includes audio content. This includes health information videos that target young children so that deaf parents can make informed decisions about the health information content for their hearing children. Captions should be available in English and Spanish, since some Latino ASL users in the United States use Spanish as their second language. Furthermore, efforts should be made to translate health information into ASL and adapt the presentation of that information so that it is culturally appropriate (22
). Communities, states, and countries should ensure that their public health emergency communication plans reach deaf people and their families and that emergency workers can access sign language interpreter services. Involving deaf people in the planning and development processes will likely result in better outcomes. Accessible and culturally appropriate health information can help deaf sign language users to make decisions about health and health care behaviors associated with chronic disease risks.
Include deaf people in surveillance and health research
. Options are required for data collection in the respondent's primary language (ie, ASL for ASL users) as is exploration of ways to include populations excluded by certain survey modalities (eg, telephone surveys). Recruitment strategies need to be adapted because adults who have been deaf since birth or early childhood have little experience with public health research. Recruitment should also be tailored to overcome deaf persons' mistrust of public health professionals that may result from prior negative health care experiences (4
). Consent processes should be studied to ensure that researchers and participants have a shared understanding of concepts such as confidentiality, randomization, blinding, and placebo use. Collaborative work to develop accessible survey methods is under way and should continue to include deaf sign language users as partners. Accurate data on health and risks will empower deaf communities to work with public health professionals to establish health priorities, create programs related to those priorities, and evaluate the effectiveness of those programs in preventing chronic diseases.
Collect new data, and analyze existing data, in ways that allow us to learn about actual deaf populations
. For health data to be useful, surveys should collect deaf-related demographic information (), such as age at onset of deafness. Adults who have been deaf since before age 3 have different patterns of health care services use (11
) and health behaviors (24
) than adults who became deaf later in life. This makes sense — a 60-year-old man who has been deaf since birth and a 60-year-old man who has been deaf since age 59 will have different life experiences, including education and employment opportunities and access to health information and health care. It would be surprising if those 2 deaf men had similar health and health care practices. We lose valuable public health information when we conduct analyses that group together all deaf people or all people who are deaf or hard-of-hearing. Reports on analyses of data without deaf-related demographics should acknowledge these limitations. Medical record and billing data currently are limited in their ability to identify people who are deaf (25
). Establishing standard domains for deaf-related data would allow for meaningful chronic disease surveillance, research, and program evaluation. Data analyses and interpretation of findings should include input from deaf people to enhance relevance and accuracy.
Deaf-Related Demographic Measures Important for Public Health
Encourage deaf sign language users to participate in public health. Community-based participatory research (CBPR) focused on health, and not specifically hearing, is an example. Deaf sign language users can add content to public health curricula and teach public health students about the deaf community, CBPR, and other topics, including cross-language and cross-cultural issues. To encourage collaboration, public health conferences should facilitate the participation of deaf sign language users. For all conference attendees to benefit from the participation of deaf sign language users, conferences must have interpreter services for presentations, including poster sessions, other formal and informal meetings, and professional networking between conference sessions and in the exhibit halls. Videos shown at conferences and on the Internet must have captions for the audio content.
Encourage deaf sign language users to pursue careers in public health, health research, and health care
. Deaf sign language users should be encouraged to pursue careers in public health and other health-related fields, as are members of other underserved minority communities. For this effort to be successful, deaf students in health professional programs must have access to the "informal curriculum," aspects of mentoring and professional development that hearing students learn outside of the formal curriculum. These opportunities occur during conversations that take place after meetings and lectures formally end and during impromptu communication with faculty and other students. Public health and other health professional training programs can collaborate with deaf and hearing faculty from other professions to learn from their experiences mentoring deaf learners. Pipeline programs for health careers should expand to reach out to deaf youth. Increasing the number of public health professionals and researchers who are deaf sign language users should enhance collaboration between public health and deaf communities, including dissemination of health information, development of appropriate and accessible programs, and participation in chronic disease research and surveillance. There will be other benefits to increasing the diversity of our public health students, workforce, and faculty. Recruiting from a new demographic may help address the projected shortage of public health professionals (27
), as well as facilitate for this underemployed population (28
) access to health-related employment (a large and growing segment of the US economy that consists of more than 16 million jobs, representing more than 11% of employed people) (29
Advocate for funding to support communication access costs for public health programs and research. Interpreter services are essential for communication between deaf sign language users and those who are not fluent in sign language. If interpreter services costs are required to come from core program budgets, accessible programs will have fewer resources for their public health initiatives and research. This "penalty" discourages accessibility and creates another disparity. Some mechanisms exist, such as the US Department of Health and Human Services' research supplements to promote diversity in health-related research (PA-08-190). These funding mechanisms are essential to ensure that our chronic disease and other public health–related programs are accessible. To prepare for the increase in demand for sign language interpreter services in these settings, we should start now to advocate for funding to increase the nation's capacity for sign language interpreter services, including advanced training to prepare interpreters for public health–related vocabulary and settings.