Civic Data Identity Platform (CDIP)

Project overview

Personal data has a lot of potential utility and value, however often citizens have minimal control over their data in regards to how it’s used, shared and monetised. The CDIP projects aims to create a platform to help citizens control their personal data, as well as, for example, facilitating medical research which requires a free flow of this data. The project will also look at what a social contract would look like in regards to the sharing and use of personal data, in a way which would preserve individuals privacy rights and yet be able to help clinicians and medical personnel use this health data to act in the public interest. The CDIP project aims to create a technical platform for patients to control what personal data is shared and to understand what citizens want around data management, what consumers of data want and how to embody that in a technical platform.

Data Source

The health and social care sectors, and allied public services, including GP, hospitals, an LHCRE and Connected Health Cities programmes.

Methodology

– An Integrated Approach to distributed ledger technology (DLT): Different from the current research and initiatives which are often purely focusing on issues of economic value generation of data, the project will consider more significant factors. The inclusion of multiple disciples and hence methodological approaches will enrich the transferability of the overall results of the project and can be a model for future DLT projects.

– Building on Established Data Initiatives: Data infrastructure and system development in health care never happen in isolation. On the contrary, new and emerging technologies will have to build on top of a complex ecosystem of existing systems, regimes and networks.

– Recognising the Importance of Public Involvement.Early public involvement in the design of large technological systems is the key for the acceptance of such technologies. A number of key design issues will be the outcome of public and specialist feedback.

START: OCTOBER 2019

END: OCTOBER 2021

FUNDED BY: The Engineering and Physical Sciences Research Council

Intended outcomes

The CDIP project aims to build a technical platform for patients to control what personal data is shared and to understand what citizens want around data management, what consumers of data want and how to embody that in a technical platform.

Potential Benefits

The project will help improve personal data management in addition to helping understand what citizens want from data privacy. Although this project focuses on health care data, the design of this system could enable citizens to control a range of other personal data, regardless of what it was. In addition to the general public who will benefit from this platform, consumers of health data (e.g. researchers in pharmaceutical industry, who use health care data) will also benefit. This platform will have the potential to transform the ways in which public and private organisations use data for improved safety, better management of complex care pathways and transparency of consent for use of data in health research.

Researchers and Project Organisation

The project is lead by John Ainsworth and combines researchers the University of Manchester and
University of Lancaster. The project is organised into 3 themes:

Theme 1:

Understanding the requirements of the social contract around data sharing

– Investigation of the legal, ethical and socio-technical requirements. (Søren Holm and Sarah
Devaney, UoM)

– Public engagement, co-design of social contract and technology impact assessment (Nigel Davies, UoL)

Theme 2:

Technical theme looking at developing software

– Core platform development (Gary Leeming, James Cunningham)

– Building identity and reputation systems (Gary Leeming, James Cunningham)

– Researching analytic supply chains (Gary Leeming, James Cunningham)

Theme 3:

Business sustainability and impact

– Lead by John Ainsworth