Screening, Diagnosis, and Intervention for Autism: Experiences of Black and Multiracial Families Seeking Care.

PURPOSE: Despite advances in screening and awareness, Black and multiracial families continue to experience challenges when seeking an autism diagnosis for their children. METHODS: We surveyed 400 Black and multiracial families of young children with autism from an existing research database in the United States about their retrospective diagnostic experiences. We gathered quantitative and qualitative data and engaged in iterative coding to understand timing and content of first concerns, families' experiences of care providers and systems, and the impact of race and culture on accessing care. RESULTS: Families provided examples of early developmental concern and described provider, systemic, and cultural barriers and facilitators to care. Families also provided insight into the influence of culture and made recommendations on how the medical system could better care for Black and multiracial families of children with autism. CONCLUSIONS: Results add to a growing body of literature supporting the need for culturally sensitive and accessible care related to developmental monitoring, diagnosis, and follow-up care for Black and multiracial children.

Risky business: a scoping review for communicating results of predictive models between providers and patients.

OBJECTIVE: Given widespread excitement around predictive analytics and the proliferation of machine learning algorithms that predict outcomes, a key next step is understanding how this information is-or should be-communicated with patients. MATERIALS AND METHODS: We conducted a scoping review informed by PRISMA-ScR guidelines to identify current knowledge and gaps in this domain. RESULTS: Ten studies met inclusion criteria for full text review. The following topics were represented in the studies, some of which involved more than 1 topic: disease prevention (N = 5/10, 50%), treatment decisions (N = 5/10, 50%), medication harms reduction (N = 1/10, 10%), and presentation of cardiovascular risk information (N = 5/10, 50%). A single study included 6- and 12-month clinical outcome metrics. DISCUSSION: As predictive models are increasingly published, marketed by industry, and implemented, this paucity of relevant research poses important gaps. Published studies identified the importance of (1) identifying the most effective source of information for patient communications; (2) contextualizing risk information and associated design elements based on users' needs and problem areas; and (3) understanding potential impacts on risk factor modification and behavior change dependent on risk presentation. CONCLUSION: An opportunity remains for researchers and practitioners to share strategies for effective selection of predictive algorithms for clinical practice, approaches for educating clinicians and patients in effectively using predictive data, and new approaches for framing patient-provider communication in the era of artificial intelligence.

Design thinking in applied informatics: what can we learn from Project HealthDesign?

OBJECTIVE: The goals of this study are to describe the value and impact of Project HealthDesign (PHD), a program of the Robert Wood Johnson Foundation that applied design thinking to personal health records, and to explore the applicability of the PHD model to another challenging translational informatics problem: the integration of AI into the healthcare system. MATERIALS AND METHODS: We assessed PHD's impact and value in 2 ways. First, we analyzed publication impact by calculating a PHD h-index and characterizing the professional domains of citing journals. Next, we surveyed and interviewed PHD grantees, expert consultants, and codirectors to assess the program's components and the potential future application of design thinking to artificial intelligence (AI) integration into healthcare. RESULTS: There was a total of 1171 unique citations to PHD-funded work (collective h-index of 25). Studies citing PHD span medical, legal, and computational journals. Participants stated that this project transformed their thinking, altered their career trajectory, and resulted in technology transfer into the commercial sector. Participants felt, in general, that the approach would be valuable in solving contemporary challenges integrating AI in healthcare including complex social questions, integrating knowledge from multiple domains, implementation, and governance. CONCLUSION: Design thinking is a systematic approach to problem-solving characterized by cooperation and collaboration. PHD generated significant impacts as measured by citations, reach, and overall effect on participants. PHD's design thinking methods are potentially useful to other work on cyber-physical systems, such as the use of AI in healthcare, to propose structural or policy-related changes that may affect adoption, value, and improvement of the care delivery system.