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 and Frith, Lucy ORCID: 0000-0002-8506-0699 (2021) 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. BMJ OPEN, 11 (8). e050167-.

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Abstract

<h4>Introduction</h4>Big data research has grown considerably over the last two decades. This presents new ethical challenges around consent, data storage and anonymisation. Big data research projects require public support to succeed and it has been argued that one way to achieve this is through public involvement and engagement. To better understand the role public involvement and engagement can play in big data research, we will review the current literature. This protocol describes the planned review methods.<h4>Methods and analysis</h4>Our review will be conducted in two stages. In the first stage, we will conduct a scoping review using Arksey and O'Malley methodology to comprehensively map current evidence on public involvement and engagement in big data research. Databases (CINAHL, Health Research Premium Collection, PubMed, Scopus, Web of Science) and grey literature will be searched for eligible papers. We provide a narrative description of the results based on a thematic analysis. In the second stage, out of papers found in the scoping review which discuss involvement and engagement strategies, we will conduct a systematic review following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, exploring the delivery and effectiveness of these strategies. We will conduct a qualitative synthesis. Relevant results from the quantitative studies will be extracted and placed under qualitative themes. Individual studies will be appraised through Mixed Methods Appraisal Tool (MMAT), we will then assess the overall confidence in each finding through Confidence in the Evidence from Reviews of Qualitative research (GRADE-CERQual). Results will be reported in a thematic and narrative way.<h4>Ethics and dissemination</h4>This protocol sets out how the review will be conducted to ensure rigour and transparency. Public advisors were involved in its development. Ethics approval is not required. Review findings will be presented at conferences and published in peer-reviewed journals.

Item Type:	Article
Uncontrolled Keywords:	public health, qualitative research, medical ethics
Divisions:	Faculty of Humanities and Social Sciences > School of the Arts
Depositing User:	Symplectic Admin
Date Deposited:	23 Sep 2021 15:16
Last Modified:	18 Jan 2023 21:28
DOI:	10.1136/bmjopen-2021-050167
Open Access URL:	http://dx.doi.org/10.1136/bmjopen-2021-050167
Related URLs:	Author Publisher
URI:	https://livrepository.liverpool.ac.uk/id/eprint/3138069

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