ORCID Profile
0000-0003-2443-4391
Current Organisations
University of Oxford
,
London School of Hygiene and Tropical Medicine Department of Population Health
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Publisher: JMIR Publications Inc.
Date: 30-06-2023
Abstract: mproving access to mental health data to accelerate research and improve mental health outcomes is a potentially achievable goal given the substantial data that can now be collected from mobile devices. Smartphones can provide a useful mechanism for collecting mental health data from young people, especially as their use is relatively ubiquitous in high-resource settings such as the UK and they have a high capacity to collect active and passive data. This raises the interesting opportunity of establishing a large bank of mental health data from young people, which could be accessed by researchers globally but it is important to clarify how to ensure this is done in an appropriate manner, aligned with the values of young people. n this study, we discuss the preferences of young people in the UK regarding the governance, sharing and use of their mental health data, with the establishment of a global databank in mind. We aimed to determine whether young people want and feel safe to share their mental health data, if so with whom, and their preferences in doing so. oung people were provided with two modules of educational material about data governance models and background about scientific research. We then conducted 2-hour focus groups, each with 2-7 participants, employing a deliberative democracy methodology to reach a consensus where possible. Findings were analysed using the framework method. oung people were generally enthusiastic about contributing data to mental health research. They believed that broader availability of mental health data could be used to discover what improves or worsens mental health and to develop new services to support young people. However, this enthusiasm came with many concerns and caveats, including distributed control of access to ensure appropriate use, distributed power, and data management that included erse representation and sufficient ethical training for applicants and data managers. lthough it is feasible to use smartphones to collect mental health data from young people in the UK, it is essential to carefully consider the parameters of such a databank. Addressing and embedding young people’s preferences, including the need for robust procedures regarding how their data is managed, stored and accessed will set a solid foundation to establishing any global databank.
Publisher: JMIR Publications Inc.
Date: 26-09-2022
Abstract: ublic involvement in research is a growing phenomenon as well as a condition of research funding, and it is often referred to as coproduction. Coproduction involves stakeholder contributions at every stage of research, but different processes exist. However, the impact of coproduction on research is not well understood. Web-based young people’s advisory groups (YPAGs) were established as part of the MindKind study at 3 sites (India, South Africa, and the United Kingdom) to coproduce the wider research study. Each group site, led by a professional youth advisor, conducted all youth coproduction activities collaboratively with other research staff. his study aimed to evaluate the impact of youth coproduction in the MindKind study. o measure the impact of web-based youth coproduction on all stakeholders, the following methods were used: analysis of project documents, capturing the views of stakeholders using the i Most Significant Change /i technique, and impact frameworks to assess the impact of youth coproduction on specific stakeholder outcomes. Data were analyzed in collaboration with researchers, advisors, and YPAG members to explore the impact of youth coproduction on research. he impact was recorded on 5 levels. First, at the paradigmatic level, a novel method of conducting research allowed for a widely erse group of YPAG representations, influencing study priorities, conceptualization, and design. Second, at the infrastructural level, the YPAG and youth advisors meaningfully contributed to the dissemination of materials infrastructural constraints of undertaking coproduction were also identified. Third, at the organizational level, coproduction necessitated implementing new communication practices, such as a web-based shared platform. This meant that materials were easily accessible to the whole team and communication streams remained consistent. Fourth, at the group level, authentic relationships developed between the YPAG members, advisors, and the rest of the team, facilitated by regular web-based contact. Finally, at the in idual level, participants reported enhanced insights into mental well-being and appreciation for the opportunity to engage in research. his study revealed several factors that shape the creation of web-based coproduction, with clear positive outcomes for advisors, YPAG members, researchers, and other project staff. However, several challenges of coproduced research were also encountered in multiple contexts and amid pressing timelines. For systematic reporting of the impact of youth coproduction, we propose that monitoring, evaluation, and learning systems be designed and implemented early.
Publisher: JMIR Publications Inc.
Date: 19-06-2023
DOI: 10.2196/42963
Abstract: Public involvement in research is a growing phenomenon as well as a condition of research funding, and it is often referred to as coproduction. Coproduction involves stakeholder contributions at every stage of research, but different processes exist. However, the impact of coproduction on research is not well understood. Web-based young people’s advisory groups (YPAGs) were established as part of the MindKind study at 3 sites (India, South Africa, and the United Kingdom) to coproduce the wider research study. Each group site, led by a professional youth advisor, conducted all youth coproduction activities collaboratively with other research staff. This study aimed to evaluate the impact of youth coproduction in the MindKind study. To measure the impact of web-based youth coproduction on all stakeholders, the following methods were used: analysis of project documents, capturing the views of stakeholders using the Most Significant Change technique, and impact frameworks to assess the impact of youth coproduction on specific stakeholder outcomes. Data were analyzed in collaboration with researchers, advisors, and YPAG members to explore the impact of youth coproduction on research. The impact was recorded on 5 levels. First, at the paradigmatic level, a novel method of conducting research allowed for a widely erse group of YPAG representations, influencing study priorities, conceptualization, and design. Second, at the infrastructural level, the YPAG and youth advisors meaningfully contributed to the dissemination of materials infrastructural constraints of undertaking coproduction were also identified. Third, at the organizational level, coproduction necessitated implementing new communication practices, such as a web-based shared platform. This meant that materials were easily accessible to the whole team and communication streams remained consistent. Fourth, at the group level, authentic relationships developed between the YPAG members, advisors, and the rest of the team, facilitated by regular web-based contact. Finally, at the in idual level, participants reported enhanced insights into mental well-being and appreciation for the opportunity to engage in research. This study revealed several factors that shape the creation of web-based coproduction, with clear positive outcomes for advisors, YPAG members, researchers, and other project staff. However, several challenges of coproduced research were also encountered in multiple contexts and amid pressing timelines. For systematic reporting of the impact of youth coproduction, we propose that monitoring, evaluation, and learning systems be designed and implemented early.
Publisher: F1000 Research Ltd
Date: 08-08-2023
DOI: 10.12688/WELLCOMEOPENRES.19383.1
Abstract: Background : The global ubiquity of smartphone use among young people makes them excellent candidates for collecting data about in iduals’ lived experiences and their relationships to mental health. However, to-date most app-based studies have been conducted in North America and Europe. Understanding young people’s willingness to participate in app-based research and share information about their mental health is key to understanding the feasibility of broad-scale research using these approaches. We aimed to understand the recruitment and engagement approaches influencing young peoples’ (aged 16-24) participation in app-based studies of mental health. We hypothesised that providing a choice of study topics will improve engagement. Methods : We developed a 12-week pilot study of mental health implemented in the MindKind app, designed to assess participants’ willingness to engage in remote mental health research, both actively and passively. Enrollees were randomised to one of two different engagement arms, either selecting their study topics of interest or receiving a fixed assignment of study topics, in order to understand the role of choice in study engagement. This pilot study was conducted in India, South Africa, and the United Kingdom. Different recruitment strategies were employed in each location. Results : The MindKind Study recruited 1,034 (India), 932 (South Africa) and 1,609 (UK) participants. Engagement differed by country with median days of activity = 2, 6, and 11 for India, South Africa, and UK, respectively. Most surprisingly, participants given a choice of study topics showed lower engagement relative to participants assigned to fixed topics (Hazard Ratio = 0.82). Conclusions : We observe equal or better engagement compared to previous comparable app-based studies of mental health. While providing participants a choice of study topics showed no advantage in our study, our qualitative analysis of participant feedback provides additional suggestions for improving engagement in future studies.
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
No related grants have been discovered for Blossom Fernandes.