As interest in autism in adulthood grows, so does the need for methods to promote the inclusion of autistic adults in research. Our objective was to create practice-based guidelines for the inclusion of autistic adults, both as research team members and as study participants. We conducted an institutional ethnography of three closely related research partnerships that used participatory methods with autistic adults over the years 2006–2018. We used an iterative approach which combined discussions with community and academic partners and artifact review. Guidelines to promote the inclusion of autistic adults as co-researchers focus on being transparent about partnership goals, clearly defining roles and choosing partners, creating processes for effective communication and power-sharing, building and maintaining trust, disseminating findings, encouraging community capacitation, and fairly compensating partners. Guidelines to promote the inclusion of autistic adults as study participants focus on maximizing autonomy and inclusion, creating an accessible consent process, offering multiple modes of participation, adapting survey instruments for use with autistic adults, creating accessible qualitative interview guides, and handling data from proxy reporters. Although these practice-based guidelines may not apply to all research teams, we hope that other researchers can capitalize on these practical lessons when including autistic adults in research.

Our objective was to obtain an in-depth understanding of autistic adults’ experiences with healthcare and their recommendations for improving care. Our academic–community partnership used a community-based participatory research approach to conduct semi-structured, open-ended interviews with 39 autistic adults and 16 people who had experience supporting autistic adults in healthcare settings. Participants identified patient-level, autism-related factors that impact healthcare interactions, including verbal communication skills, sensory sensitivities, challenges with body awareness, slow processing speed, atypical non-verbal communication, and challenges with organization. However, the success of healthcare interactions largely depended on the interplay between patient- and provider-level factors, as well as the larger context in which patients were receiving care. Provider-level factors included providers’ knowledge about autism in adults, incorrect assumptions about individual patients, willingness to allow written communication, use of accessible language, openness to providing other accommodations, and skill in appropriately incorporating supporters. System-level factors included the availability of supporters, complexity of the healthcare system, accessibility of healthcare facilities, and stigma about autism. Further efforts are needed to empower patients, adequately train providers, increase the accessibility of the healthcare system, and decrease discrimination.

The recent Institute of Medicine (IOM) report about medical errors contains 2 different messages. One is cool and measured, a call for understanding the cause

Objective To apply human factors engineering principles to improve alert interface design. We hypothesized that incorporating human factors principles

Purpose: Many older adults have inadequate health-related literacy, which is associated with poor health outcomes. Thus, it is important to identify determinants of health literacy. We investigated relationships between health literacy and general cognitive and sensory abilities, as well as education, health, and demographic variables, in a community sample of middle-aged and older adults. Design and Methods: Participants were 314 community-dwelling adults (67% female, 48% African American) diagnosed with chronic heart failure recruited for a pharmacist-based intervention study to improve adherence to chronic heart failure medications. We adminstered demographic, health, education, cognitive (e.g., processing speed, working memory), and sensory measures, and the Short Test of Functional Health Literacy in Adults (STOFHLA), as part of the baseline condition of this study. Results: STOFHLA scores were lower for participants who were older, less educated, male, African American, had more comorbidities, or scored lower on all cognitive ability measures. Hierarchical linear regression analyses showed that education and cognitive ability were independently associated with the STOFHLA measure and explained age differences in health literacy. Implications: The association of cognitive abilities and literacy has important implications for health literacy models and for interventions to reduce the impact of low health literacy on health outcomes. For example, medication instructions should be designed to reduce comprehension demands on general cognitive abilities as well as literacy skills.