Perspectives of Youths on the Ethical Use of Artificial Intelligence in Health Care Research and Clinical Care.

Importance: Understanding the views and values of patients is of substantial importance to developing the ethical parameters of artificial intelligence (AI) use in medicine. Thus far, there is limited study on the views of children and youths. Their perspectives contribute meaningfully to the integration of AI in medicine. Objective: To explore the moral attitudes and views of children and youths regarding research and clinical care involving health AI at the point of care. Design, Setting, and Participants: This qualitative study recruited participants younger than 18 years during a 1-year period (October 2021 to March 2022) at a large urban pediatric hospital. A total of 44 individuals who were receiving or had previously received care at a hospital or rehabilitation clinic contacted the research team, but 15 were found to be ineligible. Of the 29 who consented to participate, 1 was lost to follow-up, resulting in 28 participants who completed the interview. Exposures: Participants were interviewed using vignettes on 3 main themes: (1) health data research, (2) clinical AI trials, and (3) clinical use of AI. Main Outcomes and Measures: Thematic description of values surrounding health data research, interventional AI research, and clinical use of AI. Results: The 28 participants included 6 children (ages, 10-12 years) and 22 youths (ages, 13-17 years) (16 female, 10 male, and 3 trans/nonbinary/gender diverse). Mean (SD) age was 15 (2) years. Participants were highly engaged and quite knowledgeable about AI. They expressed a positive view of research intended to help others and had strong feelings about the uses of their health data for AI. Participants expressed appreciation for the vulnerability of potential participants in interventional AI trials and reinforced the importance of respect for their preferences regardless of their decisional capacity. A strong theme for the prospective use of clinical AI was the desire to maintain bedside interaction between the patient and their physician. Conclusions and Relevance: In this study, children and youths reported generally positive views of AI, expressing strong interest and advocacy for their involvement in AI research and inclusion of their voices for shared decision-making with AI in clinical care. These findings suggest the need for more engagement of children and youths in health care AI research and integration.

Engaging a person with lived experience of mental illness in a collaborative care model feasibility study.

Researchers have explored different types of treatment to help people with a mental illness with other problems they might be experiencing, such as their health condition and quality of life. Care models that involve many different health care providers working together to provide complete physical and mental health care are becoming popular. There has been a push from the research community to understand the value of including people with lived experience in such programs. While research suggests that people with lived experience may help a patient's treatment, there is little evidence on including them in a team based program. This paper describes how our research team included a person with lived experience of psychosis in both the research and care process. We list some guiding principles we used to work through some of the common challenges that are mentioned in research. Lastly, experiences from the research team, lessons learned, and a personal statement from the person with lived experience (AA) are provided to help future researchers and people with lived experience collaborate in research and healthcare. Background In our current healthcare system, people with a mental illness experience poorer physical health and early mortality in part due to the inconsistent collaboration between primary care and specialized mental health care. In efforts to bridge this gap, hospitals and primary care settings have begun to take an integrated approach to care by implementing collaborative care models to treat a variety of conditions in the past decade. The collaborative care model addresses common barriers to treatment, such as geographical distance and lack of individualized, evidence-based, measurement-based treatment. Person(s) with lived experience (PWLE) are regarded as 'experts by experience' in the scope of their first-hand experience with a diagnosis or health condition. Research suggests that including PWLE in a patient's care and treatment has significant contributions to the patient's treatment and overall outcome. However, there is minimal evidence of including PWLE in collaborative care models. This paper describes the inclusion of a PWLE in a research study and collaborative care team for youth with early psychosis. Aims To discuss the active involvement of a PWLE on the research and collaborative care team and to describe the research team's experiences and perspectives to facilitate future collaborations. Method This paper describes the inclusion of a PWLE on our research team. We provide a selective review of the literature on several global initiatives of including PWLE in different facets of the healthcare system. Additionally, we outline multiple challenges of involving PWLE in research and service delivery. Examples are provided on how recruitment and involvement was facilitated, with the guidance of several principles. Lastly, we have included a narrative note from the PWLE included in our study, who is also a contributing author to this paper (AA), where she comments on her experience in the research study. Conclusion Including PWLE in active roles in research studies and collaborative care teams can enhance the experience of the researchers, collaborative care team members, and PWLE. We showcase our method to empower other researchers and service providers to continue to seek guidance from PWLE to provide more comprehensive, collaborative care with better health outcomes for the patient, and a more satisfying care experience for the provider.

ED to EPI: protocol for a pragmatic randomised controlled trial of an SMS (text) messaging intervention to improve the transition from the emergency department to early psychosis intervention for young people with psychosis.

INTRODUCTION: While nearly half of all new psychotic disorders are diagnosed in the emergency department (ED), most young people who present to the ED with psychosis do not receive timely follow-up with a psychiatrist, and even fewer with evidence-based early psychosis intervention (EPI) services. We aim to test an intervention delivered using short message service (SMS), a low-cost, low-complexity, youth-friendly approach, to improve transitions from the ED to EPI services. METHODS AND ANALYSIS: This is a protocol for a pragmatic randomised, single blind, controlled trial with accompanying economic and qualitative evaluations conducted at the Centre for Addiction and Mental Health (CAMH) in Toronto, Canada. A consecutive series of 186 participants aged 16-29 referred by the ED to CAMH's EPI programme will be recruited for a trial of a two-way intervention involving reminders, psychoeducation and check-ins delivered via SMS. The primary outcome will be attendance at the first consultation appointment within 30 days of study enrolment assessed through chart reviews in the electronic health record. We will also extract routine clinical measures, including the Brief Psychiatric Rating Scale, Clinical Global Impression and Service Engagement Scale, and link with provincial health administrative data to examine system-level outcomes, including ED visits and psychiatric hospitalisations, 6 months and up to 2 years after baseline. We will perform a cost-effectiveness analysis of the primary study outcome and costs incurred, calculating an incremental cost effectiveness ratio. Web-based surveys and qualitative interviews will explore intervention user experience. Patients and families with lived experience will be engaged in all aspects of the project. ETHICS AND DISSEMINATION: Research Ethics Board approval has been obtained. Findings will be reported in scientific journal articles and shared with key stakeholders including youth, family members, knowledge users and decision makers. TRIAL REGISTRATION NUMBER: NCT04298450.

Early Psychosis Intervention-Spreading Evidence-based Treatment (EPI-SET): protocol for an effectiveness-implementation study of a structured model of care for psychosis in youth and emerging adults.

INTRODUCTION: While early psychosis intervention (EPI) has proliferated in recent years amid evidence of its effectiveness, programmes often struggle to deliver consistent, recovery-based care. NAVIGATE is a manualised model of EPI with demonstrated effectiveness consisting of four components: individualised medication management, individual resiliency training, supported employment and education and family education. We aim to implement NAVIGATE in geographically diverse EPI programmes in Ontario, Canada, evaluating implementation and its effect on fidelity to the EPI model, as well as individual-level outcomes (patient/family member-reported and interviewer-rated), system-level outcomes (captured in provincial administrative databases) and engagement of participants with lived experience. METHODS AND ANALYSIS: This is a multisite, non-randomised pragmatic hybrid effectiveness-implementation type III mixed methods study coordinated at the Centre for Addiction and Mental Health (CAMH) in Toronto. Implementation is supported by the Provincial System Support Program, a CAMH-based programme with provincial offices across Ontario, and Extension of Community Healthcare Outcomes Ontario Mental Health at CAMH and the University of Toronto. The primary outcome is fidelity to the EPI model as measured using the First Episode Psychosis Services-Fidelity Scale. Four hundred participants in the EPI programmes will be recruited and followed using both individual-level assessments and health administrative data for 2 years following NAVIGATE initiation. People with lived experience will be engaged in all aspects of the project, including through youth and family advisory committees. ETHICS AND DISSEMINATION: Research ethics board approval has been obtained from CAMH and institutions overseeing the local EPI programmes. Study findings will be reported in scientific journal articles and shared with key stakeholders including youth, family members, programme staff and policymakers. TRIAL REGISTRATION NUMBER: NCT03919760; Pre-results.