Richardson, Jordan P

Background While use of artificial intelligence (AI) in healthcare is increasing, little is known about how patients view healthcare AI. Characterizing patient attitudes and beliefs about healthcare AI and the factors that lead to these attitudes can help ensure patient values are in close alignment with the implementation of these new technologies. Methods We conducted 15 focus groups with adult patients who had a recent primary care visit at a large academic health center. Using modified grounded theory, focus-group data was analyzed for themes related to the formation of attitudes and beliefs about healthcare AI. Results When evaluating AI in healthcare, we found that patients draw on a variety of factors to contextualize these new technologies including previous experiences of illness, interactions with health systems and established health technologies, comfort with other information technology, and other personal experiences. We found that these experiences informed normative and cultural beliefs about the values and goals of healthcare technologies that patients applied when engaging with AI. The results of this study form the basis for a theoretical framework for understanding patient orientation to applications of AI in healthcare, highlighting a number of specific social, health, and technological experiences that will likely shape patient opinions about future healthcare AI applications. Conclusions Understanding the basis of patient attitudes and beliefs about healthcare AI is a crucial first step in effective patient engagement and education. The theoretical framework we present provides a foundation for future studies examining patient opinions about applications of AI in healthcare.

ABSTRACT: Objective: Owing to fragmentation in the medical system, many parents of children with disabilities report taking on a care coordinator and advocate role. The parental advocacy and care coordination requirements are further amplified in this population because of a lack of awareness about sex chromosome aneuploidies (SCAs) in medical and social services settings, as well as the complex needs of affected children. This burden disproportionately affects mothers and low-resource families as a result of gendered ideas of parenthood and social stratification in resource access. The aim of this study is to understand the unique parental burdens of SCAs and family support needs. Methods: We conducted 43 interviews with individuals with SCAs and/or their parents and qualitatively coded and analyzed the transcripts for themes relating to parent advocacy, medical services, social and educational services, and coping. Results: Our findings indicate that parents must repeatedly advocate for their concerns about their child to be taken seriously before diagnosis and continue to advocate for services and interventions throughout childhood and adolescence. Parents also report the need to educate health care professionals about their child's medical condition. A majority of the parent participants were women, and single mothers reported high levels of emotional burden. Conclusion: Parents of children with SCAs shoulder additional roles of medical advocate and care coordinator. This causes excessive burden on families but also disadvantages families in which parents are unable to act as an advocate for their child.