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

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          Key Points

          Question

          What are the perspectives of children and youths regarding research and clinical care involving health artificial intelligence (AI) at the point of care?

          Findings

          In this qualitative study including 28 individuals aged 10 to 17 years, participants had a generally positive view of research, willingness to participate, knowledge about AI, engagement, and interest in AI research.

          Meaning

          The findings of this study suggest that engaging children and youths is important to build trust and develop social license as they express a strong desire to be included in decision-making regarding AI integration.

          Abstract

          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.

          Abstract

          This qualitive study evaluates the opinions of individuals aged 10 to 18 years on the use of artificial intelligence in research, clinical trials, and therapeutic intervention.

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          Most cited references31

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          The impact of personal dispositions on information sensitivity, privacy concern and trust in disclosing health information online

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            Acceptability of artificial intelligence (AI)-led chatbot services in healthcare: A mixed-methods study

            Background Artificial intelligence (AI) is increasingly being used in healthcare. Here, AI-based chatbot systems can act as automated conversational agents, capable of promoting health, providing education, and potentially prompting behaviour change. Exploring the motivation to use health chatbots is required to predict uptake; however, few studies to date have explored their acceptability. This research aimed to explore participants’ willingness to engage with AI-led health chatbots. Methods The study incorporated semi-structured interviews (N-29) which informed the development of an online survey (N-216) advertised via social media. Interviews were recorded, transcribed verbatim and analysed thematically. A survey of 24 items explored demographic and attitudinal variables, including acceptability and perceived utility. The quantitative data were analysed using binary regressions with a single categorical predictor. Results Three broad themes: ‘Understanding of chatbots’, ‘AI hesitancy’ and ‘Motivations for health chatbots’ were identified, outlining concerns about accuracy, cyber-security, and the inability of AI-led services to empathise. The survey showed moderate acceptability (67%), correlated negatively with perceived poorer IT skills OR = 0.32 [CI95%:0.13–0.78] and dislike for talking to computers OR = 0.77 [CI95%:0.60–0.99] as well as positively correlated with perceived utility OR = 5.10 [CI95%:3.08–8.43], positive attitude OR = 2.71 [CI95%:1.77–4.16] and perceived trustworthiness OR = 1.92 [CI95%:1.13–3.25]. Conclusion Most internet users would be receptive to using health chatbots, although hesitancy regarding this technology is likely to compromise engagement. Intervention designers focusing on AI-led health chatbots need to employ user-centred and theory-based approaches addressing patients’ concerns and optimising user experience in order to achieve the best uptake and utilisation. Patients’ perspectives, motivation and capabilities need to be taken into account when developing and assessing the effectiveness of health chatbots.
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              Public responses to the sharing and linkage of health data for research purposes: a systematic review and thematic synthesis of qualitative studies

              Background The past 10 years have witnessed a significant growth in sharing of health data for secondary uses. Alongside this there has been growing interest in the public acceptability of data sharing and data linkage practices. Public acceptance is recognised as crucial for ensuring the legitimacy of current practices and systems of governance. Given the growing international interest in this area this systematic review and thematic synthesis represents a timely review of current evidence. It highlights the key factors influencing public responses as well as important areas for further research. Methods This paper reports a systematic review and thematic synthesis of qualitative studies examining public attitudes towards the sharing or linkage of health data for research purposes. Twenty-five studies were included in the review. The included studies were conducted primarily in the UK and North America, with one study set in Japan, another in Sweden and one in multiple countries. The included studies were conducted between 1999 and 2013 (eight studies selected for inclusion did not report data collection dates). The qualitative methods represented in the studies included focus groups, interviews, deliberative events, dialogue workshops and asynchronous online interviews. Results Key themes identified across the corpus of studies related to the conditions necessary for public support/acceptability, areas of public concern and implications for future research. The results identify a growing body of evidence pointing towards widespread general—though conditional—support for data linkage and data sharing for research purposes. Whilst a variety of concerns were raised (e.g. relating to confidentiality, individuals’ control over their data, uses and abuses of data and potential harms arising) in cases where participants perceived there to be actual or potential public benefits from research and had trust in the individuals or organisations conducting and/or overseeing data linkage/sharing, they were generally supportive. The studies also find current low levels of awareness about existing practices and uses of data. Conclusions Whilst the results indicate widespread (conditional) public support for data sharing and linkage for research purposes, a range of concerns exist. In order to ensure public support for future research uses of data greater awareness raising combined with opportunities for public engagement and deliberation are needed. This will be essential for ensuring the legitimacy of future health informatics research and avoiding further public controversy.
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                Author and article information

                Journal
                JAMA Netw Open
                JAMA Netw Open
                JAMA Network Open
                American Medical Association
                2574-3805
                1 May 2023
                May 2023
                1 May 2023
                : 6
                : 5
                : e2310659
                Affiliations
                [1 ]Department of Bioethics, The Hospital for Sick Children, Toronto, Ontario, Canada
                [2 ]Genetics & Genome Biology, Peter Gilgan Centre for Research & Learning, Toronto, Ontario, Canada
                [3 ]Labatt Family Heart Centre, The Hospital for Sick Children, Toronto, Ontario, Canada
                [4 ]Department of Paediatrics, University of Toronto, Toronto, Ontario, Canada
                [5 ]Holland Bloorview Kids Rehabilitation Hospital, Toronto, Ontario, Canada
                [6 ]Institute for Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada
                [7 ]The Hospital for Sick Children, Toronto, Ontario, Canada
                [8 ]Dalla Lana School of Public Health, University of Toronto, Toronto, Ontario, Canada
                Author notes
                Article Information
                Accepted for Publication: February 27, 2023.
                Published: May 1, 2023. doi:10.1001/jamanetworkopen.2023.10659
                Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2023 Thai K et al. JAMA Network Open.
                Corresponding Author: Melissa D. McCradden, PhD, The Hospital for Sick Children, 222 Kenilworth Ave, 1 Toronto, ON M4L3S6 Canada ( melissa.mccradden@ 123456sickkids.ca ).
                Author Contributions: Dr McCradden had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.
                Concept and design: Thai, Stephenson, Menna-Dack, Zlotnik Shaul, Anderson, McCradden.
                Acquisition, analysis, or interpretation of data: Thai, Tsiandoulas, Stephenson, Zlotnik Shaul, Anderson, Shinewald, Ampofo, McCradden.
                Drafting of the manuscript: Thai, Ampofo, McCradden.
                Critical revision of the manuscript for important intellectual content: Thai, Tsiandoulas, Stephenson, Menna-Dack, Zlotnik Shaul, Anderson, Shinewald, McCradden.
                Statistical analysis: Thai, McCradden.
                Obtained funding: McCradden.
                Administrative, technical, or material support: Thai, Menna-Dack, Zlotnik Shaul, Shinewald, McCradden.
                Supervision: Stephenson, Anderson, McCradden.
                Conflict of Interest Disclosures: None reported.
                Funding/Support: This study was funded by the Edwin Leong Centre for Health Children and the Dalla Lana School of Public Health seed grant (t Ms Thai). Additional funding for recruitment materials was provided by the SickKids Foundation.
                Role of the Funder/Sponsor: The funding organizations had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.
                Data Sharing Statement: See Supplement 2.
                Additional Contributions: We thank the participants for their time and feedback in this study. Donna Koller, PhD (Toronto Metropolitan University), and Samantha Anthony, PhD, MSW, RSW (The Hospital for Sick Children), provided scientific review of the study protocol, Francine Buchanan, PhD (The Hospital for Sick Children), gave feedback on the interview guide and advice on recruitment strategies, Jennifer Stinson, PhD (The Hospital for Sick Children), assisted with participant recruitment, Jelena Djurkic (The Hospital for Sick Children) provided support with communications and outreach, and Cathy Maser, MN, NP (The Hospital for Sick Children), helped with inclusive interviewing methods and supported participant recruitment. No financial compensation was provided.
                Article
                zoi230336
                10.1001/jamanetworkopen.2023.10659
                10152306
                37126349
                d72b3570-e7ba-4711-8efa-ee00856b3660
                Copyright 2023 Thai K et al. JAMA Network Open.

                This is an open access article distributed under the terms of the CC-BY License.

                History
                : 23 November 2022
                : 27 February 2023
                Categories
                Research
                Original Investigation
                Online Only
                Ethics

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