Data is an inherent part of our society, forming the basis for many systems of living. However, the good and clear use of data in different settings is still under development. Public perception and understanding of data, including the use of their own, is often poor and whilst recent years have seen a drive towards increased data-driven decision making, data is still in many scenarios under-utilised as a tool for innovation. In 2020, the University of Liverpool established the Liverpool City Region Civic Data Cooperative, funded by the Liverpool City Region Combined Authority, to create a data-sharing platform that means the civic data from local residents is better used to improve care and wellbeing, and fuel innovation.
Challenges
Civic data is data that describes communities. It can be healthcare data, information gathered by government organisations or even other community-based organisations. Some civic data can be open to the public for use where it does not contain sensitive or confidential information about individuals. Civic data can truly be described as being about people, and therefore it is vital that whoever is using it is transparent and honest about what data they hold.
A key part of the Civic Data Cooperative (CDC) mission is to ensure that civic data can be accessed and used for the benefit of the community on a collaborative, transparent and inclusive basis. This means they are developing and demonstrating the value of new approaches to using data that is protected by governance and legislation. Their work is an excellent example of the main aims of the University of Liverpool’s Digital Research theme, where cross-institutional work from science, healthcare and humanities is driving societal transformation through data and its uses.
The CDC is hosted by the University of Liverpool, led by Principal Investigator Professor Iain Buchan (Chair in Public Health and Clinical Informatics and Associate Pro Vice Chancellor for Innovation) and Director Gary Leeming. “We’re here to support organisations to begin thinking about data as an institution rather than something to be consumed, and help them to manage it in a better way” describes Gary Leeming. “A key part of this is increasing knowledge exchange opportunities and creating better access for people to understand what is happening with data and how we can share it. We’re demonstrating best practices for local organisations, such as the NHS and in local authorities, as well as working with small and medium enterprises, to identify the challenges around innovation in the region, and what we can do to begin addressing them.”
Aims of the CDC
The work of the CDC covers three key areas. Firstly, the team aims to increase public participation in discussions around how their data is collected, stored and used through engaging and informing communities. The CDC also supports research by operating as a gateway for accessing data and providing trusted research environments. The Combined Intelligence for Population Health Action (CIPHA) project is an excellent example of this, and its success has been recognised in the 2021 Bionow awards as Healthcare Project of the Year. CIPHA is a population health management platform developed through a collaboration between the CDC, University of Liverpool, the NHS and local government and was vital for the successful delivery of the world’s first mass COVID-19 testing pilot scheme in Liverpool (Liverpool Covid-SMART). CIPHA provided a trusted environment for researchers to access sensitive healthcare data in a secure manner, and the project is continuing to provide a platform hosting linked data sets that support research and development of population health analytics.
In addition to these two elements, the CDC also acts to engage businesses, particularly Small and Medium Enterprises (SMEs) in order to support local economic growth. This has great benefits for both sides: for the CDC it ensures that what the team offers fits with the wider research and development ecosystem and for businesses, it creates an opportunity to share their ideas and needs for additional support and expertise from a university and academic research base, creating opportunities for establishing and linking broader knowledge exchange partnerships.
The CDC’s recent programme ‘What’s Your Problem?’ created an opportunity for local businesses to connect with public services to tackle real, existing problems. Their project is driving solution-based thinking when looking at data use in public services, and especially the role of SMEs. The project enabled key stakeholders and decision-makers in public services to share their learnings around their specific needs with SMEs and organisations, before pitching their ideas in an event in April 2022 with the opportunity to win seed funding and to continue to work with the CDC to progress their ideas.
The importance of public participation
Whilst the CDC provides access to what is quantitative data, for example healthcare information, it can also provide a route to understanding local community opinion through its public engagement and participatory work. Working with the Citizens Juries c.i.c and the Centre for New Democractic Processes, and co-sponsored by the pharmaceutical and biotechnology company Pfizer, the team have been investigating public opinion around the major global challenge of antimicrobial resistance and the planned regional responses to help tackle this issue.
Antimicrobial resistance has been described as a silent pandemic, and it is expected that within a decade we will be facing infections that are no longer treatable with existing antibiotics. Unfortunately, there are limited incentives for pharmaceutical companies to develop new drugs, with a lack of investment in this research area. Organisations actively researching the challenges in this area need access to data around antimicrobial resistance that guides us in the future of treatment, research and local policy, and it is important that the public understands how their data is used whilst guiding policy-makers on how to communicate public health information around such important issues.
The citizen’s jury sessions invited experts working in the field of antimicrobial resistance to provide evidence on the growing issue and potential responses, who also answered questions around the local and regional proposals to tackle the problem including how healthcare data might be used. This measure of public opinion, including how it might change depending on information provided by experts, will be used by Pfizer to guide their internal antimicrobial research as well as when looking for further investment, and this novel approach has provided a great level of insight into how to engage with the public on this key issue.
Pfizer described their vision as being “to create breakthrough medicines that change patients’ lives and as an organisation, we are increasingly seeking to engage with patients and members of the public to ensure that their needs are addressed in all that we do. This citizens’ jury project, in collaboration with Liverpool Civic Data Cooperative (CDC) and Centre for Infectious Disease Research (CEIDR), was a valuable collaboration that provided the Pfizer team with insights, both directly on views from the public about creation of data-sharing networks and the role of Pharma, plus indirectly on how to effectively engage with members of the public to solicit opinions on complex discussion topics.”
The CDC’s work has broad impacts, but most importantly it supports increasing public knowledge and awareness about the use of their data and how impactful it is for researchers and companies. By providing trusted platforms to access data, through services that reinforce the ideas of cooperation and trust, the CDC in turn provides important data access to researchers along with an opportunity to use data and public opinion to leverage further investment around important challenges. Finally, the team are creating opportunities for partners to understand the local and regional space to ensure the needs of the communities are better met.
PP-UNP-GBR-1583 August 2022
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