What patients and caregivers want to know when consenting to the use of digital behavioral markers
Abstract Artificial intelligence (AI)-based computational tools for deriving digital behavioral markers are increasingly able to automatically detect clinically relevant patterns in mood and behavior through algorithmic analysis of continuously and passively collected data. The integration of these...
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| Format: | Article |
| Language: | English |
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Springer
2024-12-01
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| Series: | NPP-Digital Psychiatry and Neuroscience |
| Online Access: | https://doi.org/10.1038/s44277-024-00022-9 |
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| author | Anika Sonig Christine Deeney Meghan E. Hurley Eric A. Storch John Herrington Gabriel Lázaro-Muñoz Casey J. Zampella Birkan Tunc Julia Parish-Morris Jenny Blumenthal-Barby Kristin Kostick-Quenet |
| author_facet | Anika Sonig Christine Deeney Meghan E. Hurley Eric A. Storch John Herrington Gabriel Lázaro-Muñoz Casey J. Zampella Birkan Tunc Julia Parish-Morris Jenny Blumenthal-Barby Kristin Kostick-Quenet |
| author_sort | Anika Sonig |
| collection | DOAJ |
| description | Abstract Artificial intelligence (AI)-based computational tools for deriving digital behavioral markers are increasingly able to automatically detect clinically relevant patterns in mood and behavior through algorithmic analysis of continuously and passively collected data. The integration of these technologies into clinical care is imminent, most notably in clinical psychology and psychiatry but also other disciplines (e.g., cardiology, neurology, neurosurgery, pain management). Meanwhile, ethical guidelines for implementation are lacking, as are insights into what patients and caregivers want and need to know about these technologies to ensure acceptability and informed consent. In this work, we present qualitative findings from interviews with 40 adolescent patients and their caregivers examining ethical and practical considerations for translating these technologies into clinical care. We observed seven key domains (in order of salience) in stakeholders’ informational needs: (1) clinical utility and value; (2) evidence, explainability, evaluation and contestation; (3) accuracy and trustworthiness; (4) data security, privacy, and misuse; (5) patient consent, control, and autonomy; (6) physician-patient relationship; and (7) patient safety, well-being, and dignity. Drawing from these themes, we provide a checklist of questions, as well as suggestions and key challenges, to help researchers and practitioners respond to what stakeholders want to know when integrating these technologies into clinical care and research. Our findings inform participatory approaches to co-designing treatment roadmaps for using these AI-based tools for enhanced patient engagement, acceptability and informed consent. |
| format | Article |
| id | doaj-art-47d6a778db1043b6ab5fbc8a84d92b51 |
| institution | OA Journals |
| issn | 2948-1570 |
| language | English |
| publishDate | 2024-12-01 |
| publisher | Springer |
| record_format | Article |
| series | NPP-Digital Psychiatry and Neuroscience |
| spelling | doaj-art-47d6a778db1043b6ab5fbc8a84d92b512025-08-20T02:20:38ZengSpringerNPP-Digital Psychiatry and Neuroscience2948-15702024-12-012111510.1038/s44277-024-00022-9What patients and caregivers want to know when consenting to the use of digital behavioral markersAnika Sonig0Christine Deeney1Meghan E. Hurley2Eric A. Storch3John Herrington4Gabriel Lázaro-Muñoz5Casey J. Zampella6Birkan Tunc7Julia Parish-Morris8Jenny Blumenthal-Barby9Kristin Kostick-Quenet10Center for Medical Ethics and Health Policy, Baylor College of MedicineCenter for Medical Ethics and Health Policy, Baylor College of MedicineCenter for Medical Ethics and Health Policy, Baylor College of MedicineMenninger Department of Psychiatry and Behavioral Sciences, Baylor College of MedicineDepartment of Child and Adolescent Psychiatry and Behavioral Sciences, Children’s Hospital of PhiladelphiaCenter for Bioethics, Harvard Medical SchoolDepartment of Child and Adolescent Psychiatry and Behavioral Sciences, Children’s Hospital of PhiladelphiaDepartment of Child and Adolescent Psychiatry and Behavioral Sciences, Children’s Hospital of PhiladelphiaDepartment of Child and Adolescent Psychiatry and Behavioral Sciences, Children’s Hospital of PhiladelphiaCenter for Medical Ethics and Health Policy, Baylor College of MedicineCenter for Medical Ethics and Health Policy, Baylor College of MedicineAbstract Artificial intelligence (AI)-based computational tools for deriving digital behavioral markers are increasingly able to automatically detect clinically relevant patterns in mood and behavior through algorithmic analysis of continuously and passively collected data. The integration of these technologies into clinical care is imminent, most notably in clinical psychology and psychiatry but also other disciplines (e.g., cardiology, neurology, neurosurgery, pain management). Meanwhile, ethical guidelines for implementation are lacking, as are insights into what patients and caregivers want and need to know about these technologies to ensure acceptability and informed consent. In this work, we present qualitative findings from interviews with 40 adolescent patients and their caregivers examining ethical and practical considerations for translating these technologies into clinical care. We observed seven key domains (in order of salience) in stakeholders’ informational needs: (1) clinical utility and value; (2) evidence, explainability, evaluation and contestation; (3) accuracy and trustworthiness; (4) data security, privacy, and misuse; (5) patient consent, control, and autonomy; (6) physician-patient relationship; and (7) patient safety, well-being, and dignity. Drawing from these themes, we provide a checklist of questions, as well as suggestions and key challenges, to help researchers and practitioners respond to what stakeholders want to know when integrating these technologies into clinical care and research. Our findings inform participatory approaches to co-designing treatment roadmaps for using these AI-based tools for enhanced patient engagement, acceptability and informed consent.https://doi.org/10.1038/s44277-024-00022-9 |
| spellingShingle | Anika Sonig Christine Deeney Meghan E. Hurley Eric A. Storch John Herrington Gabriel Lázaro-Muñoz Casey J. Zampella Birkan Tunc Julia Parish-Morris Jenny Blumenthal-Barby Kristin Kostick-Quenet What patients and caregivers want to know when consenting to the use of digital behavioral markers NPP-Digital Psychiatry and Neuroscience |
| title | What patients and caregivers want to know when consenting to the use of digital behavioral markers |
| title_full | What patients and caregivers want to know when consenting to the use of digital behavioral markers |
| title_fullStr | What patients and caregivers want to know when consenting to the use of digital behavioral markers |
| title_full_unstemmed | What patients and caregivers want to know when consenting to the use of digital behavioral markers |
| title_short | What patients and caregivers want to know when consenting to the use of digital behavioral markers |
| title_sort | what patients and caregivers want to know when consenting to the use of digital behavioral markers |
| url | https://doi.org/10.1038/s44277-024-00022-9 |
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