The Civic Data Identity Platform (CDIP) is an EPSRC-funded project conducted by an interdisciplinary team of researchers from the University of Manchester and Lancaster University.
Why is this research important?
The UK has a large amount of valuable health data which could be used to help improve health outcomes for individual patients and wider society. However, this data is often stored across lots of different places. This makes it difficult for health professionals and medical researchers to make the most of this information and for patients to make informed choices about who has access to their health data and how it is used.
There is ongoing research looking into different solutions to this problem, but approaches are often led by technology enthusiasts rather than being driven by the views and needs of people that have an interest in sharing or using health data.
Recent developments in Distributed Ledger Technologies (DLTs), sometimes known as Blockchain, are opening up possibilities for new ways of overseeing and controlling the transfer of data between individuals, organizations, and industry. We want to explore the potential of this technology and see if it can help reimagine how health data can be shared between people and organisations.
What is the purpose of this research?
We aim to create a technical platform to manage access to health data in the form of a Civic Data Identity Partnership (CDIP). We hope that this type of platform will make it easier for citizens to see, control and give consent for use of their data in health research and to make decisions about how different organisations may use this data. Before we begin to design the platform, we need to find out more about what controls individuals want over the sharing of their health information and what data other parties or organisations want access to.
To achieve these aims, we are engaging with a wide range of public and professional stakeholders, including citizens, clinicians and medical personnel, data commissioners and so forth. These consultations will help us to identify the technical, legal, social and ethical issues and challenges that surround using the CDIP platform as way of improving access and control of health data as an integral part of the design process.
How will the research develop?
There are lots of different scholars with different research interests such as health, ethics, law and digital design, working together on this project.
Over the course of two years, the project will take a multi-disciplinary approach to research the potential of the CDIP platform based on four key areas:
CDIP Platform: We want to build a digital platform that can help people to manage access to health data. The platform will offer a clear and transparent record of all data transactions between different parties, as well as supporting a range of auditing processes through permanent data transaction recording.
Security and Trust: We also need to develop a model that can be trusted by patients, clinicians and researchers to generate insight and learning on the usefulness of different digital health interventions. It will also remove intermediaries (third parties) from the system, putting citizens in control of data and in a direct transactional relationship with people and organisations that need to access health data for a range of purposes. Finally, the platform will provide a single source of identity for individuals and organisations based on public key cryptography.
Consent: We want to build a clear and transparent governance platform to support patient consent so the flow of personal health data can become easier to manage and track. This includes devising consent options that provide users with the ability to review who has access to data and how it is being used at an increasingly granular level.
Reputation: Consent choices also need to be informed by understandings of reputation and capability. We aim to explore how the platform can provide easily accessible information which can help citizens decide whether or not they wish to share their data with certain organisations. A solution for managing organisational and individual app reputation will be an essential element of the final platform design.
Learn more about our timeline and project organisation in our overview.