Title: Improving the lives of stroke survivors with data
Funder: Department of Health and Social Care

Abstract: Background Stroke survivors, clinicians, and policymakers have consistently called for better quality data on the long-term consequences of stroke, to better inform their decision making. People with stroke are surviving longer but often with complex needs and multiple morbidities. New classifications of stroke include asymptomatic and mildly symptomatic patients. The impact of these issues on services and care are not well understood. Aims and Objectives We aim to improve the lives of stroke survivors through a Programme of data collection, analysis and modelling, and use in practice. Our objectives are to: Maximise the potential for stroke data to improve patient care through stakeholder engagement; Estimate the risk and longer term impact (including economic) of stroke on survivors and society; Produce clinical, epidemiological and economic models which will provide the information needed for all stakeholders to make informed decisions; Investigate how patient portals can improve stroke survivors decision making and outcomes. Methods Maximise the potential for stroke data to improve care, through research with stroke survivors, health professionals, and policymakers (Work Package [WP] 1). By combining Policy Labs, and engagement using social science methods with patients and other stakeholders, we will define the content and approach of the data collection, analysis, and communication in the Programme, through to impact in practice. Investigate the impact of stroke on survivors in the 2020s (WP2). We will use local and national data to estimate the health, social, and economic effects of stroke. We will estimate the impact of new ICD-11 definitions of stroke, and the outcomes and needs of stroke survivors in the longer term, both individually (predictive models) and at a population level for the next 30 years. Investigate how patient portals improve the care of stroke survivors, who may be older, with multiple morbidities, and communication and cognitive impairments (WP3). We will design and implement a portal driven by patient needs identified through WPs 1 and 2, and evaluate the effects on data collection, patient involvement in decision making, health and social care service use and outcomes, and cost-effectiveness in a feasibility trial. Develop a Stroke Analytics Dashboard to make detailed, accurate, up-to-date information available to the public and policymakers for decision making. Timelines for delivery Our track record of impactful interdisciplinary stroke research, our unique access to stroke data, our innovative programme of stakeholder engagement, and our Academic Health Science Centre make us excellently positioned to deliver the Programme, and achieve benefit for patients and the health service within five years. Impact and dissemination This Programme aims to produce the tools, data, and analytics needed to improve the lives of stroke survivors. To disseminate our research findings, in addition to research publications, we will produce policy briefings, reports, open source software and data, and platforms for patients and policymakers to access data and models to inform their decisions. Centre to our approach is engagement with stakeholders from stroke survivors and clinicians to local and national policymakers, providing a pathway to translate research findings into patient benefit.

Lay abstract: Stroke survivors, clinicians, and policymakers have asked for health information to be easier to access, and more effectively used. Effective hospital care means that more people with stroke are surviving, but often live with severe disability and other illnesses. Improved brain scans mean that we are able to detect more stroke than ever before. We need to understand the impact of these changes to make sure that the best care can be provided to people after stroke. We aim to improve the lives of stroke survivors by developing new ways of collecting, analysing, and modelling data. Our findings will improve patient care by allowing effective planning of services, personalised care, and reducing inequalities in access to care and outcomes after stroke. The research questions we will address are priorities in the NHS Long Term Plan. We will: Work with stroke survivors, carers, health professionals, commissioners of care and national policymakers throughout the programme. We will build on our work with the King s Stroke Research Patients and Families Group, and host a series of &ldquo;Policy Labs&rdquo;, a recently developed way of engaging with policymakers. This work will be core to the whole programme. By focusing on stakeholder needs, we will make sure the research has the greatest impact possible, from individual patient decisions through to national policy; Transform the information recorded by the South London Stroke Register (SLSR), to reflect the information needs of stakeholders, and modern stroke definitions. We will record all first strokes in people of all ages living in urban, multi-ethnic Lambeth and Southwark, London. This will allow better understanding of the impact of stroke over time. We will create statistical tools which allow patient and population-level predictions, providing the information needed to enable more personalised and effective care. We will test these findings in other national stroke datasets. Test a patient portal for delivering personalised care&mdash;an online system where patients can access their personal health information and provide relevant information to healthcare professionals; Develop a Stroke Analytics Dashboard to make detailed, up-to-date information from our research available to the public and policymakers for decision making; Investigate the costs of health and social care in stroke (including professional care and informal care from friends and family). We will create economic models, which will help to understand which elements of care should be provided after stroke, how much care costs, and how best to organise and provide that care. We will work with our patient and stakeholder groups, and with stroke patient and professional organisations, to use our findings to improve the lives of stroke survivors. We will share our findings nationally and internationally through policy briefings, patient-focused newsletters and blogs, academic conferences, journal articles, via social media.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES;7.1 INDIVIDUAL CARE NEEDS;2.6 RESOURCES AND INFRASTRUCTURE (AETIOLOGY);8.2 HEALTH AND WELFARE ECONOMICS
Health categories: STROKE