Title: Whole system data linkage accelerators: a North-South partnership to unlock public health data
Funder: Department of Health and Social Care

Abstract: The world’s biggest tech companies - Facebook, Google and Amazon – have successfully used our personal data to influence our behaviours. In the public sector we have been slow at recognising the importance of using routinely collected personal data. Now in the NHS we are catching up and showing how linking health data can identify patients most in need of support, for example using frailty scores in general practice to identify and target care at older people with frailty, and identifying the most vulnerable during the COVID-19 pandemic._x000D_ _x000D_ However, our health is shaped more by where we live, our education, and our economic and social conditions. Data about these factors is collected routinely by different local and national government organisations and often at a local level. If these data can be connected in a usable way, we will be in a stronger position to make effective decisions about how to improve health and well-being and reduce health inequalities._x000D_ _x000D_ Our vision is for a connected data system that benefits those who make policy, researchers, health and care workers and the public. This brings some challenges. The public tend to have less trust in government departments than in their hospitals or GPs. There are different legal and ethical frameworks in local government compared to the NHS, with often greater concerns about the risks of sharing data. Every patient in the NHS has their own unique identification number, which makes linkage a simpler process, but that is not the case for local government datasets._x000D_ _x000D_ Bradford and Tower Hamlets have been working closely over the last two years to establish a North-South partnership to prevent ill-health by tackling the wider determinants of health such as school achievement, financial security, urban design, transport, green space and food habits. Data is key to studying these and to improving them. Local authorities have rich but unused data systems. Accessing and linking these data has multiple challenges. Foremost is the importance of building trust with local communities about the use of their data. If the data is going to lead to improvement then it must be part of routine practice, not developed in an ‘ivory tower’. There are legal and technical challenges to linking and using data, and practical challenges of where the data is stored and how it can be accessed safely and securely. There is also the challenge of presenting the data in a form that can be easily used and understood to support decision making._x000D_ _x000D_ Our study will capture the lessons from our two trail-blazing local authorities. We want to make the research real, so we have identified two practical examples that will allow us to explore and demonstrate how linked routine data can improve lives – vulnerable children and child obesity. We will interview community members, local authority staff and wider stakeholders so that we can describe the barriers but also more importantly learn from them. We will map the mix of data sources and connections to help understand the different pieces of the data jigsaw across a city or district._x000D_ _x000D_ We will turn this learning into a ‘How to’ guide for local authorities. It will describe the benefits of data linkage, how the public can contribute, how the barriers to data linkage can be overcome and how data linkage can become part of policy and practice to improve health. We will also write a business case to support the development of a sustainable usable data system.

Lay abstract: The richness of linked population data provides exciting opportunities to understand local health needs, identify and predict those in most need of support and evaluate health interventions. There has been extensive investment to unlock the potential of clinical data for health research in the UK. However, our health is mostly determined by social, economic, education, environmental, housing and food system factors which are influenced by local authorities. _x000D_ _x000D_ Bradford and Tower Hamlets local authorities are working in partnership to establish ActEarly City Collaboratories as one of four national UK Prevention Research Partnership Consortia. As part of this programme we have gained considerable experience about the barriers and opportunities for unlocking data relevant to researching and promoting population health and reducing inequalities._x000D_ _x000D_ Building on this experience we have developed a framework to structure our systematic exploration of organisational, technical, legal, political and resource barriers which need to be tackled to develop agile and accessible life course system-wide linked datasets that are embedded in public health practice. Our Whole System Data Accelerator Framework (DAF) covers public engagement; practitioner and policy integration; legal and ethical approvals; information governance; technicalities of data linkage; data curation and guardianship; data validity and visualisation. _x000D_ _x000D_ We will apply this framework to two exemplar projects (use cases) that will provide concrete examples at a local authority level that illustrate the potential of data linkage for public health decision making and research – developing an electronic vulnerable index to better identify vulnerable children and data linkage to inform and monitor the impact of implementation of actions to tackle childhood obesity. _x000D_ _x000D_ The study has four objectives:_x000D_ _x000D_ 1) Describe the experiences and barriers of data system development based on our experience with Connected Bradford and the Tower Hamlets Whole Systems Project._x000D_ 2) Explore the views of data users, stakeholders and community members through qualitative focus groups and interviews._x000D_ 3) Map data flows required to develop useable data pathways including timing and coverage of data capture, nature of electronic data recording, sharing of data across systems, capture of repeated measures._x000D_ 4) Develop a business case for sustainable linkage to inform decision making and compile an Implementation Guide for local authorities. This will include guidance for public engagement, practical steps to address barriers, model data sharing agreements, technical guidance on data linkage, improvement methods._x000D_ _x000D_ Our project report will include a systematic assessment of barriers and other challenges to unlocking data opportunities to support better research and practice, and how these barriers can be overcome. We will outline opportunities for the NIHR to support the sustainable linkage of data platforms which can underpin the development of local authority research systems and more effective and efficient policies to improve population health and reduce inequalities._x000D_ _x000D_ All our research will be co-produced with our well-established patient and public engagement networks.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: GENERIC HEALTH RELEVANCE