A holistic approach to integrating patient, family, and lived experience voices in the development of the BrainHealth Databank: a digital learning health system to enable artificial intelligence in the clinic

Frontiers in Health Services

Health Services

Susan Conway¹  Benson Lai-Zhao¹  Melissa Hiebert¹  Courtney Young¹  Rohan R. Mehta¹  Miriam McCann¹  Morena Miranda¹  Lina Chiuccariello¹  Kimberly Hunter¹  Connie Putterman²  Nicole Thomson³  Jose Arturo Santisteban⁴  Joanna Yu⁵  Sean Hill⁶  Nelson Shen⁷ 

[1] Centre for Addictions and Mental Health, Toronto, Canada;Centre for Addictions and Mental Health, Toronto, Canada;CanChild, Hamilton, Canada;CHILD-BRIGHT Network, Montreal, Canada;Kids Brain Health Network, Burnaby, Canada;Province of Ontario Neurodevelopmental (POND) Network, Toronto, Canada;Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Canada;Krembil Centre for Neuroinformatics, Centre for Addiction and Mental Health, Toronto, Canada;Krembil Centre for Neuroinformatics, Centre for Addiction and Mental Health, Toronto, Canada;Health and Technology, Vector Institute for Artificial Intelligence, Toronto, Canada;Krembil Centre for Neuroinformatics, Centre for Addiction and Mental Health, Toronto, Canada;Health and Technology, Vector Institute for Artificial Intelligence, Toronto, Canada;Department of Psychiatry, University of Toronto, Toronto, Canada;Krembil Centre for Neuroinformatics, Centre for Addiction and Mental Health, Toronto, Canada;Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Canada;AMS Healthcare, Toronto, Canada;

关键词: patient and family engagement;    lived experience engagement;    mental health;    digital health technology;    artificial intelligence;    machine learning;    learning health system;   

DOI  :  10.3389/frhs.2023.1198195

 received in 2023-03-31, accepted in 2023-10-04,  发布年份 2023

来源: Frontiers

【 摘 要 】

Artificial intelligence, machine learning, and digital health innovations have tremendous potential to advance patient-centred, data-driven mental healthcare. To enable the clinical application of such innovations, the Krembil Centre for Neuroinformatics at the Centre for Addiction and Mental Health, Canada's largest mental health hospital, embarked on a journey to co-create a digital learning health system called the BrainHealth Databank (BHDB). Working with clinicians, scientists, and administrators alongside patients, families, and persons with lived experience (PFLE), this hospital-wide team has adopted a systems approach that integrates clinical and research data and practices to improve care and accelerate research. PFLE engagement was intentional and initiated at the conception stage of the BHDB to help ensure the initiative would achieve its goal of understanding the community's needs while improving patient care and experience. The BHDB team implemented an evolving, dynamic strategy to support continuous and active PFLE engagement in all aspects of the BHDB that has and will continue to impact patients and families directly. We describe PFLE consultation, co-design, and partnership in various BHDB activities and projects. In all three examples, we discuss the factors contributing to successful PFLE engagement, share lessons learned, and highlight areas for growth and improvement. By sharing how the BHDB navigated and fostered PFLE engagement, we hope to motivate and inspire the health informatics community to collectively chart their paths in PFLE engagement to support advancements in digital health and artificial intelligence.

【 授权许可】

Unknown   
© 2023 Yu, Shen, Conway, Hiebert, Lai-Zhao, McCann, Mehta, Miranda, Putterman, Santisteban, Thomson, Young, Chiuccariello, Hunter and Hill.