Public involvement and engagement in big data research: protocol for a scoping review and a systematic review of delivery and effectiveness of strategies for involvement and engagement

Teodorowski, Piotr; Jones, Elisa; Tahir, Naheed; Ahmed, Saiqa; Frith, Lucy

doi:10.1136/bmjopen-2021-050167

Cited by 6 publications

(3 citation statements)

References 34 publications

(48 reference statements)

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“…This was the first of the three PhD projects that the public advisors became involved in. Co‐authored by public advisors, the review protocol [ 21 ] and the conference abstract have been published elsewhere [ 22 ]. As public advisors might require support and training to be fully involved in research [ 23 , 24 ], and big data research can be a complex topic for the general public [ 25 ], during the first meeting, the doctoral researcher designed and delivered training on what big data are to ensure their familiarity with it.…”

Section: Background Of Doctoral Thesis In the Context Of Public Invol...mentioning

confidence: 99%

Evaluation of Public Involvement in Doctoral Research Using a Four‐Dimensional Theoretical Framework

Teodorowski,

Tahir,

Ahmed

2024

Health Expectations

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BackgroundWorking together and co‐production with public advisors have become popular among health researchers. This practice extends to doctoral researchers who involve public advisors at different stages of their research or throughout their doctoral journey.ObjectiveA doctoral researcher and two public advisors jointly evaluated public involvement in doctoral research.MethodsUsing the established public involvement evaluation framework by Gibson and colleagues, public advisors and a doctoral researcher mapped and evaluated their experiences of public involvement in doctoral research. The four‐dimensional framework allowed the authors to reflect on (1) the strength of the public voice, (2) the number of ways in which public advisors had an opportunity to get involved, (3) whether the discussion was about the public or organisation's (doctoral researcher, university or funder) concerns and (4) if the organisation changed or resisted feedback. Results are presented in a diagrammatic and narrative way.ResultsPublic advisors saw themselves as having a stronger voice in doctoral research than the doctoral researcher perceived. All agreed that there existed multiple ways for public advisors to be involved. Public advisors' feedback was taken on board, but it was also limited due to restrictions of what the doctoral programme allowed.ConclusionPublic advisors ensured that the doctoral research was more relevant to the public. The ongoing involvement also shaped the doctoral researcher's thinking and views.Patient and Public InvolvementTwo public advisors were involved throughout the 3 years of this doctoral research. They co‐evaluated this involvement and are co‐authors of this paper.

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Section: Background Of Doctoral Thesis In the Context Of Public Invol...mentioning

confidence: 99%

Evaluation of Public Involvement in Doctoral Research Using a Four‐Dimensional Theoretical Framework

Teodorowski,

Tahir,

Ahmed

2024

Health Expectations

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“…Despite understanding the importance of PPIE, there is limited knowledge of how this can be effectively facilitated in big data research. 34 A previously published system logic model identifying key elements of PPIE in big data research recognized the inclusion of seldom-heard communities as a key component, 34 and therefore, there is a need to understand how to ensure all voices are included. This paper explores researchers' experiences of involving and engaging seldom-heard communities in big data research.…”

Section: Research Aimmentioning

confidence: 99%

‘To me, it's ones and zeros, but in reality that one is death’: A qualitative study exploring researchers' experience of involving and engaging seldom‐heard communities in big data research

Teodorowski

Rodgers

Fleming

et al. 2023

Health Expectations

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Background Big data research requires public support. It has been argued that this can be achieved by public involvement and engagement to ensure that public views are at the centre of research projects. Researchers should aim to include diverse communities, including seldom‐heard voices, to ensure that a range of voices are heard and that research is meaningful to them. Objective We explored how researchers involve and engage seldom‐heard communities around big data research. Methods This is a qualitative study. Researchers who had experience of involving or engaging seldom‐heard communities in big data research were recruited. They were based in England (n = 5), Scotland (n = 4), Belgium (n = 2) and Canada (n = 1). Twelve semistructured interviews were conducted on Zoom. All interviews were audio‐recorded and transcribed, and we used reflexive thematic analysis to analyse participants' experiences. Results The analysis highlighted the complexity of involving and engaging seldom‐heard communities around big data research. Four themes were developed to represent participants' experiences: (1) abstraction and complexity of big data, (2) one size does not fit all, (3) working in partnership and (4) empowering the public contribution. Conclusion The study offers researchers a better understanding of how to involve and engage seldom‐heard communities in a meaningful way around big data research. There is no one right approach, with involvement and engagement activities required to be project‐specific and dependent on the public contributors, researchers' needs, resources and time available. Patient and Public Involvement Two public contributors are authors of the paper and they were involved in the study design, analysis and writing.

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“…Stakeholder support is crucial for the success of large-scale data research projects, such as this [40]. One way to achieve this is through early, sustained, and meaningful patient and public involvement (PPI) [41, 42]. In this paper, we follow the National Institute for Health and Care Research definition of PPI, as follows: “ research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them” [43].…”

Section: Introductionmentioning

confidence: 99%

Establishing a national linked database for fetal alcohol spectrum disorder (FASD) in the UK: multi-method public and professional involvement to determine acceptability and feasibility

Harding,

Samways,

Dillon

et al. 2024

Preprint

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Objective: to conduct public and professional involvement work to establish stakeholder views on the feasibility, acceptability, key purposes, and design of a national linked longitudinal research database for fetal alcohol spectrum disorder (FASD) in the UK.  Methods: Following stakeholder-mapping, we identified contributors through collaborator networks and online searches. We consulted with stakeholders using online workshops (one for adults with FASD [and their supporters] N=5; one for caregivers of people with FASD N=7), 1:1/small-team video calls/email communication twith clinicians, policymakers, data-governance experts, third-sector representatives, and researchers [N=35]), and one hybrid clinical workshop (N=17). Discussions covered data availability, benefits, challenges, and design preferences for a national pseudonymised linked database for FASD. We derived key themes from the notes and recordings collected across all involvement activities.   Results: Our tailored, multi-method approach generated high levels of stakeholder engagement. Stakeholders expressed strong support for a pseudonymised national linked database for FASD. Key anticipated benefits were the potential for: increased awareness and understanding of FASD, leading to better support; new insights into clinical profiles, leading to greater diagnostic efficiency; facilitating international collaboration; and increased knowledge of the long-term impacts of FASD on health, social care, education, economic and criminal justice outcomes. Policymakers noted clear alignment with contemporary FASD and digital transformation priorities. Given the rich data infrastructure established in the UK, stakeholders expressed that a national linked FASD database could be world-leading. Common stakeholder concerns were around privacy and data-sharing and the importance of retaining space for clinical judgement alongside insights gained from quantitative analyses. Conclusions: Multi-method and multidisciplinary public and professional involvement activities demonstrated the feasibility and acceptability of establishing a national linked database for FASD in the UK. Perceived benefits and challenges varied by stakeholder group, demonstrating that flexible, diverse, embedded stakeholder collaboration will be essential as we establish this database.

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Public involvement and engagement in big data research: protocol for a scoping review and a systematic review of delivery and effectiveness of strategies for involvement and engagement

Cited by 6 publications

References 34 publications

Evaluation of Public Involvement in Doctoral Research Using a Four‐Dimensional Theoretical Framework

Evaluation of Public Involvement in Doctoral Research Using a Four‐Dimensional Theoretical Framework

‘To me, it's ones and zeros, but in reality that one is death’: A qualitative study exploring researchers' experience of involving and engaging seldom‐heard communities in big data research

Establishing a national linked database for fetal alcohol spectrum disorder (FASD) in the UK: multi-method public and professional involvement to determine acceptability and feasibility

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