Public Involvement & Engagement in the work of a data safe haven:

Abstract

Background: The SAIL Databank is a data safe haven established in 2007 at Swansea University (Wales). It was set up to create new opportunities for research using routinely-collected health and other public service datasets in linkable anonymised form. SAIL forms the bedrock of other Population Data Science initiatives made possible by the data and safe haven environment.
 Aim: The aim of this paper is to provide an overview of public involvement and engagement in connection with the SAIL Databank and related Population Data Science initiatives.
 Approach: We have a public involvement and engagement policy for SAIL in the context of Population Data Science. We established a Consumer Panel to provide advice on the work of SAIL and associated initiatives, including on proposed uses of SAIL data. We reviewed the topics discussed and provide examples of advice to researchers. We carried out a survey with members on their experiences of being on the Panel and their perceptions of the work of SAIL. We have a programme of wider public engagement and provide illustrations of this work.
 Discussion: We summarise what this paper adds and some lessons learned. In the rapidly developing area of Population Data Science it is important that people feel welcome, that they are encouraged to ask questions and are provided with digestible information and adequate consideration time. Citizens have provided us with valuable anticipated and unanticipated opinions and novel viewpoints. We seek to take a pragmatic approach, prioritising the communication modes that allow maximum public input commensurate with the purpose of the activity.
 Conclusion: This paper has set out our policy, rationale, scope and practical approaches to public involvement and engagement for SAIL and our related Population Data Science initiatives. Although there will be jurisdictional, cultural and organizational differences, we believe that the material covered in this paper will be of interest to other data focused enterprises across the world.

Impact through Engagement

“…We understand PI&E as a spectrum of activities as elucidated by Arnstein's ladder of citizen participation [7]. This model has been adapted many times, as we have done within our work and has been done successfully by other ADR UK partners [8].…”

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

“…Public involvement and engagement have been recognised as an essential step in gaining public support in big data research, and for ensuring that such endeavours reflect public views and priorities [49][50][51][52][53]. Following best practice guidelines, we adopted a flexible, multimethod approach to make our public involvement work as inclusive and accessible as possible for different stakeholder groups, and involved contributors at the earliest stages of our project [44,52].…”

Towards a standardised cross-sectoral data access agreement template for research: a core set of principles for data access within trusted research environments

“…Recent experiences, such as the closure of the Care.data programme [ 36 ] and the postponement of the General Practice Data for Planning and Research Direction (GPDPR) programme, have underscored the repercussions of an inadequate social contract with criticism centred on insufficient public engagement and information dissemination [ 37 ]. While PIE traditionally focuses on the development of research projects, approving access, and dissemination of findings [ 38 ], in this case, the public was invited to actively participate in improving research-related contracts. The inclusion of PIE in data governance is vital to ensure that data is used safely and for public benefit.…”