Ethics, Integrity, Trust and Public Involvement in Big Data Management

The aim of this project is to explore how we can develop good governance procedures for large, multi-source health data sets, by more thoroughly involving the community and reflecting community values.

The creation of large, multi-source health data sets, anonymised at various level, with the potential for integrating data and adding new ‘patient created’ data from apps, are increasingly seen as a way of improving health and social care services, making services safer, more effective and better value for money.

A key aspect of the success of running and sustaining these data sets is ensuring public trust and making governance arrangements transparent and accountable. Patient public involvement and engagement (PPIE) work is a central mechanism for this (Beier et al, 2019), and this project will contribute to both practical and theoretical understandings of how this can be most meaningfully carried out.

This PhD will seek to gauge the ‘civic temperature’ of the local population to understand the value people hold in their own health and how information on the use and role of these large combined data sets, can be provided. The purpose of this is to educate and empower local communities and engender a sense of living in a ‘trustworthy system’. We will explore: what’s important to them (the public), what do they understand about what data is held on them and their families? What would they like agencies to use this data for? What ideas do they have to improve the information and how could it be used to determine service provision in their communities? Linking with other work being conducted in the Institute of Population Health in in Liverpool, the impact on health inequalities and ensuring involvement strategies are tailored and appropriate for different communities, will be key elements of the work carried out in this PhD project.

We are looking for an enthusiastic person with an interest in digital health, ethics and public involvement. Essential requirements are a good first degree (i.e. 2.1 or equivalent) in a relevant subject (social sciences, humanities, health related subject). A Masters qualification and experience of qualitative research will be an advantage.

Application is by CV and Cover Letter. The Cover Letter must detail your interest in the studentship, related experience and training and suitability for the position. Applications to be sent to Dr Lucy Frith.