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.

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.

Identifying indicators of meaningful patient portal use by psychiatric populations.

The primary objective of this study was to identify meaningful indicators of patient portal use deemed important to psychiatric consumers. The secondary objectives were to uncover: 1) barriers and facilitators to patient portal use; and, 2) desired functionality of the technology by psychiatric consumers.A qualitative descriptive study was conducted using focus groups consisting of psychiatric consumers, their family members/caregivers, and Peer Support Workers. Two members of the research team independently performed a content analysis, and came to agreement on the identified coding hierarchy and themes. A total of twenty-three participants took part in one of five focus groups. Engagement and empowerment, consumer experience and satisfaction, and quality of care were identified as outcome indicators. Privacy and security, portal usage, and usability were identified as important process indicators. A number of barriers and facilitators were identified. Finally, psychiatric consumers desired functionality of a patient portal were discussed.Findings suggest that patient portal research among psychiatric populations can be conducted using many of the indicators that have previously been used for physical health populations. However, this study identified other unique considerations that should be accounted for when evaluating a patient portal among psychiatric populations.

Where is the family voice? Examining the relational dimensions of the family- healthcare professional and its perceived impact on patient care outcomes in mental health and addictions.

BACKGROUND: We explored the relationship between family members and healthcare professionals (HCPs), specifically how family members can influence the course and outcome of patient care for youth. Exploring this under-researched area provided an opportunity to understand the tripartite relationship between the family, the youth experiencing mental health problems or substance use concerns and their HCP. METHODS: A qualitative research design was used to gain a full understanding of how family members experience relationships with HCPs. We interviewed 21 family members using semi-structure questions to explore the type of relationships formed between HCPs and family members throughout a patient's course of care, the family member's perceived role in the care of their youth accessing mental health or addiction services and the family member's awareness of formalized structures (i.e., hospital rules, policies) and resources that support family involvement. RESULTS: Within a relationship-centred framework, four themes, with various sub-themes emerged from the interviews: 1) The family member-HCP relationship regarding creating a positive impression, being an extension of the patient and the discovery of "pink flags"; 2) The family member-youth-HCP relationship regarding the receptivity of youth to family involvement and a youth's individual right to privacy; 3)The family member's relationship to self with regard to the situation being a family illness; and 4) The family member's relationship with friends, family and peers regarding the feelings of loneliness, stigma and shame and the lack of understanding about mental health problems and substance use. CONCLUSIONS: Our study provided in-depth information about the importance of family involvement in the care and health outcomes of youth who are accessing mental health and addiction services. Family members experienced and conceptualized their relationships with HCPs, their youth, themselves and their friends and peers as active interactions that influenced the course and outcomes of care. Future studies are needed to collect the multiple perspectives of youth and HCPs alongside with the family perspectives.