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.
Background Disrupted social connections may negatively affect youth mental health. In contrast, sustained quality social connections (QSCs) can improve mental health outcomes. However, few studies have examined how these quality connections affect depression and anxiety outcomes within digital interventions, and conceptualization is limited. Objective The aim of this study is to conceptualize, appraise, and synthesize evidence on QSC within digital interventions (D-QSC) and the impact on depression and anxiety outcomes for young people aged 14-24 years. Methods A systematic scoping review and meta-analysis was conducted using the Joanna Briggs Institute methodological frameworks and guided by experts with lived experience. Reporting was guided by the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses). The MEDLINE, Embase, PsycINFO, and CINAHL databases were searched against a comprehensive combination of key concepts on June 24, 2020. The search concepts included young people, digital intervention, depression, anxiety, and social connection. Google was also searched. A reviewer independently screened abstracts and titles and full text, and 9.99% (388/3882) of these were screened by a second reviewer. A narrative synthesis was used to structure the findings on indicators of D-QSC and mechanisms that facilitate the connection. Indicators of D-QSC from the included studies were synthesized to produce a conceptual framework. Results Of the 5715 publications identified, 42 (0.73%) were included. Among the included studies, there were 23,319 participants. Indicators that D-QSC was present varied and included relatedness, having a sense of belonging, and connecting to similar people. However, despite the variation, most of the indicators were associated with improved outcomes for depression and anxiety. Negative interactions, loneliness, and feeling ignored indicated that D-QSC was not present. In 24% (10/42) of the applicable studies, a meta-analysis showed a significant decrease in depression (–25.6%, 95% CI –0.352 to –0.160; P<.001) and anxiety (–15.1%, 95% CI –0.251 to –0.051; P=.003) after a D-QSC. Digital mechanisms that helped create a quality connection included anonymity, confidentiality, and peer support. In contrast, mechanisms that hindered the connection included disconnection from the real world and inability to see body language. Data synthesis also identified a 5-component conceptual framework of D-QSC that included rapport, identity and commonality, valued interpersonal dynamic, engagement, and responded to and accepted. Conclusions D-QSC is an important and underconsidered component for youth depression and anxiety outcomes. Researchers and developers should consider targeting improved QSC between clinicians and young people within digital interventions for depression. Future research should build on our framework to further examine relationships among individual attributes of QSC, various digital interventions, and different populations.
Background High quality is a necessary feature of healthcare delivery. Healthcare quality challenges are particularly present in conditions of extreme adversity, such as conflict settings or sustained humanitarian crises. Digital health technologies have recently emerged as an innovation to deliver care around the world in a variety of settings. However, there is little insight into how digital health technologies can be used to improve the quality of care where extreme adversity introduces unique challenges. This study aimed to identify how digital health technologies may be most impactful in improving the quality of care and evaluate opportunities for accelerated and meaningful digital innovation in adverse settings. Methods A phenomenological approach (Interpretative Phenomenological Approach [IPA]), using semi-structured interviews, was adopted. Six individuals were interviewed in person based on their expertise in global health, international care delivery, and the application of digital health technologies to improve the quality of care in extreme adversity settings. The interviews were informed by a semi-structured topic guide with open-ended questions. The transcripts were compiled verbatim and were systematically examined by two authors, using the framework analysis method to extract themes and subthemes. Results The participants identified several areas in which digital health technologies could be most impactful, which include engagement in care, continuity of care, workforce operations, and data collection. Opportunities for accelerated digital innovation include improving terminology, identity, ownership, and interoperability, identifying priority areas for digital innovation, developing tailored solutions, coordination and standardisation, and sustainability and resilience. Conclusions These results suggest that there are conditions that favour or challenge the application of digital health technologies, even in specific areas in which they could be useful. A better understanding of the drivers and barriers to digitally driven quality improvement in settings of extreme adversity could inform international policies and optimisation strategies for the future.
BACKGROUND Evidence suggests that healthcare data sharing may strengthen care coordination, improve quality and safety, and reduce costs. However, in order to achieve efficient, meaningful adoption of healthcare data sharing initiatives, it is necessary to engage all stakeholders, from healthcare professionals to patients. Although previous work has assessed healthcare professionals’ perceptions of data sharing, the general public perspectives and particularly seldom heard groups, have yet to be fully assessed. OBJECTIVE This study aims to explore public views, particularly their hopes and concerns, around healthcare 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 healthcare data sharing. A multidisciplinary team with expertise in research, public involvement and human-centered design developed the concept. The installation took place in three separate events, between Nov 2018 and Nov 2019. A combination of convenience and snowballing sampling was used. Participants were asked to fill self-administered feedback cards, and to describe their hopes and fears about the meaningful use of data in healthcare. 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 conversation around complex topics in participatory digital medicine. A total of 352 qualitative feedback cards were collected, each reflecting participants’ ‘hopes’ and ‘fears’ for healthcare data sharing. Thematic analyses identified six themes under ‘hopes’: (1) enablement of personal access and ownership, (2) increased interoperability and collaboration, (3) generation of evidence for better and safer care, (4) improved timeliness and efficiency, (5) delivery of more personalised care, and (6) equality. The five main ‘fears’ identified included (1) inadequate security and exploitation, (2) data inaccuracy, (3) distrust , (4) discrimination and inequality, and (5) less patient-centred care. CONCLUSIONS This work sheds new light on the main hopes and fears from the public in what concerns healthcare data sharing. Importantly, our results highlight novel concerns from the public, in particular in what concerns the impact on health disparities, both at international and local level and on delivering patient-centred 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 healthcare data use. CLINICALTRIAL Not applicable
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