Beacon: big data publics

The Centre’s Beacon Projects aspire to exemplify the ways in which the Centre aims to create and sustain cultures and environments of health through transdisciplinary engaged research.

Health research & non-traditional data: engaging with publics

Dr Karyn Morrissey,  Professor Lora Fleming, Dr Ann Grand, Dr Kath Maguire, Ms Rita Alflatt

Good public health is a valuable commodity, and finding ways in which public health can be maintained or increased benefits everyone. Anonymised individual level data, either in patient records or large-scale health surveys, are a key characteristic of health research. These data have been used to develop a range of public health measures, such as legislation on air pollution, smoking and alcohol consumption. Many people have concerns about the use of these data, and the institutions that produce them, such as the Office of National Statistics and the NHS, have developed protocols to ensure they are shared ethically and used responsibly.

However, there are now many new sources of data that relate to our health, for example data from social media, personal devices and “apps”, data from store cards and environmental sensor data. These data all have the potential to transform public health. This is particularly true if these personalised data are linked to electronic patient data or health insurance data.

These ‘new’, or non-traditional, data are often held by companies and third-party organisations, rather than health bodies or governments. This means that for the first time, data held outside mandatory data protection mechanisms can be used by public health researchers and to shape public health research more broadly.

Often, such data are collected without people knowing, which makes sharing and using them for health research problematic. To make informed decisions about data sharing, it become important to understand how and why researchers are using our data. However, given the abstract nature of data and research in general, simple reassurance, top-down educational tools and public messaging about the benefits of data sharing for health research are unlikely to be enough.

This project has two interlinked aims. First, to explore people’s concerns and expectations of health researchers using their personal data from a range of sources, including both traditional (national surveys) and non-traditional (social media) as a means to inform the development of future health policies.

A key requirement is to ensure that any consultation on data and health research goes beyond just providing information and reassuring participants, but rather includes respectful, genuine debate and dialogue between researchers and members of the public. The second aim will explore the usefulness of a Publics’ Jury (PJ) (otherwise known as a Citizens’ Jury) approach as a means of engaging diverse publics in a manner that encourages debate and dialogue around health research and data sharing, rather than the top down provision of information alone. However, to ensure that the PJ is as inclusive and engaging of diverse publics, a series of Focus Groups will be used to explore a set of statements that will guide the ‘charge’ put towards the PJ. It is believed that the co-creation of this ‘charge’ will ensure that the direction of enquiry is framed by engaged publics rather than being a purely academic framing.

Project update

October 2019 – We held a pilot focus group in Truro, to test the usefulness of a focus group as a route to co-creation of the ‘charge’ for the Publics Jury. Further focus groups will be held later in the year. We drew on the evidence from the March workshop to create three ‘data stories’ as conversation starters for the group.

Workshop, March 2019

March 2019 – we held a launch workshop in Truro that brought together researchers, members of local community groups and organisations and residents of Truro. The aim of the workshop was to begin to understand: what are the acceptable uses of ‘Big Data,’ for health research, especially health data gathered from sources such as social media and store cards?; who should be able to access these resources?; what should they be able to use the data for? and who should manage these processes?