Opening a "Can of Worms" to Explore the Public's Hopes and Fears About Health Care Data Sharing: Qualitative Study.

BACKGROUND: Evidence suggests that health care data sharing may strengthen care coordination, improve quality and safety, and reduce costs. However, to achieve efficient and meaningful adoption of health care data-sharing initiatives, it is necessary to engage all stakeholders, from health care professionals to patients. Although previous work has assessed health care professionals' perceptions of data sharing, perspectives of the general public and particularly of seldom heard groups have yet to be fully assessed. OBJECTIVE: This study aims to explore the views of the public, particularly their hopes and concerns, around health care data sharing. METHODS: An original, immersive public engagement interactive experience was developed-The Can of Worms installation-in which participants were prompted to reflect about data sharing through listening to individual stories around health care data sharing. A multidisciplinary team with expertise in research, public involvement, and human-centered design developed this concept. The installation took place in three separate events between November 2018 and November 2019. A combination of convenience and snowball sampling was used in this study. Participants were asked to fill self-administered feedback cards and to describe their hopes and fears about the meaningful use of data in health care. The transcripts were compiled verbatim and systematically reviewed by four independent reviewers using the thematic analysis method to identify emerging themes. RESULTS: Our approach exemplifies the potential of using interdisciplinary expertise in research, public involvement, and human-centered design to tell stories, collect perspectives, and spark conversations around complex topics in participatory digital medicine. A total of 352 qualitative feedback cards were collected, each reflecting participants' hopes and fears for health care data sharing. Thematic analyses identified six themes under hopes: enablement of personal access and ownership, increased interoperability and collaboration, generation of evidence for better and safer care, improved timeliness and efficiency, delivery of more personalized care, and equality. The five main fears identified included inadequate security and exploitation, data inaccuracy, distrust, discrimination and inequality, and less patient-centered care. CONCLUSIONS: This study sheds new light on the main hopes and fears of the public regarding health care data sharing. Importantly, our results highlight novel concerns from the public, particularly in terms of the impact on health disparities, both at international and local levels, and on delivering patient-centered care. Incorporating the knowledge generated and focusing on co-designing solutions to tackle these concerns is critical to engage the public as active contributors and to fully leverage the potential of health care data use.

Computerised cognitive assessment in patients with traumatic brain injury: an observational study of feasibility and sensitivity relative to established clinical scales.

Background: Online technology could potentially revolutionise how patients are cognitively assessed and monitored. However, it remains unclear whether assessments conducted remotely can match established pen-and-paper neuropsychological tests in terms of sensitivity and specificity. Methods: This observational study aimed to optimise an online cognitive assessment for use in traumatic brain injury (TBI) clinics. The tertiary referral clinic in which this tool has been clinically implemented typically sees patients a minimum of 6 months post-injury in the chronic phase. Between March and August 2019, we conducted a cross-group, cross-device and factor analyses at the St. Mary's Hospital TBI clinic and major trauma wards at Imperial College NHS trust and St. George's Hospital in London (UK), to identify a battery of tasks that assess aspects of cognition affected by TBI. Between September 2019 and February 2020, we evaluated the online battery against standard face-to-face neuropsychological tests at the Imperial College London research centre. Canonical Correlation Analysis (CCA) determined the shared variance between the online battery and standard neuropsychological tests. Finally, between October 2020 and December 2021, the tests were integrated into a framework that automatically generates a results report where patients' performance is compared to a large normative dataset. We piloted this as a practical tool to be used under supervised and unsupervised conditions at the St. Mary's Hospital TBI clinic in London (UK). Findings: The online assessment discriminated processing-speed, visual-attention, working-memory, and executive-function deficits in TBI. CCA identified two significant modes indicating shared variance with standard neuropsychological tests (r = 0.86, p < 0.001 and r = 0.81, p = 0.02). Sensitivity to cognitive deficits after TBI was evident in the TBI clinic setting under supervised and unsupervised conditions (F (15,555) = 3.99; p < 0.001). Interpretation: Online cognitive assessment of TBI patients is feasible, sensitive, and efficient. When combined with normative sociodemographic models and autogenerated reports, it has the potential to transform cognitive assessment in the healthcare setting. Funding: This work was funded by a National Institute for Health Research (NIHR) Invention for Innovation (i4i) grant awarded to DJS and AH (II-LB-0715-20006).

Smart Home Sensing and Monitoring in Households With Dementia: User-Centered Design Approach.

BACKGROUND: As life expectancy grows, so do the challenges of caring for an aging population. Older adults, including people with dementia, want to live independently and feel in control of their lives for as long as possible. Assistive technologies powered by artificial intelligence and internet of things devices are being proposed to provide living environments that support the users' safety, psychological, and medical needs through remote monitoring and interventions. OBJECTIVE: This study investigates the functional, psychosocial, and environmental needs of people living with dementia, their caregivers, clinicians, and health and social care service providers toward the design and implementation of smart home systems. METHODS: We used an iterative user-centered design approach comprising 9 substudies. First, semistructured interviews (9 people with dementia, 9 caregivers, and 10 academic and clinical staff) and workshops (35 pairs of people with dementia and caregivers, and 12 health and social care clinicians) were conducted to define the needs of people with dementia, home caregivers, and professional stakeholders in both daily activities and technology-specific interactions. Then, the spectrum of needs identified was represented via patient-caregiver personas and discussed with stakeholders in a workshop (14 occupational therapists; 4 National Health Service pathway directors; and 6 researchers in occupational therapy, neuropsychiatry, and engineering) and 2 focus groups with managers of health care services (n=8), eliciting opportunities for innovative care technologies and public health strategies. Finally, these design opportunities were discussed in semistructured interviews with participants of a smart home trial involving environmental sensors, physiological measurement devices, smartwatches, and tablet-based chatbots and cognitive assessment puzzles (10 caregivers and 2 people with dementia). A thematic analysis revealed factors that motivate household members to use these technologies. RESULTS: Outcomes of these activities include a qualitative and quantitative analysis of patient, caregiver, and clinician needs and the identification of challenges and opportunities for the design and implementation of remote monitoring systems in public health pathways. CONCLUSIONS: Participatory design methods supported the triangulation of stakeholder perspectives to aid the development of more patient-centered interventions and their translation to clinical practice and public health strategy. We discuss the implications and limitations of our findings, the value and the applicability of our methodology, and directions for future research.