Developing learning health systems in the UK: Priorities for action

Abstract

About the reportThe Health Foundation is an independent charity committed to bringing about better health and health care for people in the UK.Health Data Research UK (HDR UK) is the UK's national institute for health data science. HDR UK's mission is to bring together the UK's health and care data to enable discoveries that improve people's lives by uniting, improving and using data as one national institute. HDR UK's Better Care programme aims to equip clinicians and patients in the UK with the best possible data-based information to make decisions about their care. 1 Over the past 2 years, as part of this wider programme, the Health Foundation and HDR UK have been working in partnership to deliver the Better Care Catalyst programme. This has funded three projects to develop data-driven tools that aim to improve health care decision making 2 and also supported three workstreams to set out the training, knowledge mobilisation and policy actions required to support data-driven learning and improvement in health care. This report is the final output of the Better Care Catalyst programme's policy and insights workstream, which researched the barriers and enablers for implementing learning health system approaches in the UK. It supports the wider Better Care programme and community by providing analysis and advice to further the use of data to improve health care services. It also identifies a range of opportunities and actions that policymakers and organisational and system leaders can take to advance the learning health systems agenda across the UK. 3

The CFHealthHub Learning Health System: Using Real-Time Adherence Data to Support a Community of Practice to Deliver Continuous Improvement in an Archetypal Long-Term Condition

“…CFHealthHub is a learning health system supporting a community of practice, caring for patients with an archetypal long-term condition, supported to pay attention to metrics that matter. A recent report from The Health Foundation cited CFHealthHub as the only disease-specific full learning health system with national reach in the UK [65]. The nature of CF as a condition, with a national registry and a small number of dedicated health care settings, makes total population denominators visible and can highlight inequity.…”

Realising the potential of community-based multidisciplinary teams: insights from evidence

“…Applying learning health system * approaches and providing rapid feedback on whether MDTs are being implemented as planned and achieving the results expected will allow for ongoing learning and improvement. 69…”

“…81,82,83,84,85 However, for a true learning health system, these skills and methods need also be embedded within local teams. 69 There are established local collaborations, including universities and health or social care organisations, such as Applied Research Collaborations and numerous local teams doing insightful analyses -as well as a growing acknowledgement in the NHS of the importance of data and analysis to inform decision making. 71,86,87,88,89,90 There are also opportunities for better networking and peer support, 91,92,93 knowledge sharing, 94 available written resources and open access code, 95,96,97 as well as training.…”

Development and use of a novel tool for assessing and improving researcher embeddedness in learning health systems and applied system improvements

“…Embeddedness represents being located in, connected to, and responsively oriented toward the systems that researchers are trying to improve [6][7][8]. This helps researchers identify and address challenges of substantial interest to health systems (rather than setting a research agenda disengaged from practice concerns) [9,10]. Importantly, embeddedness also provides access to key leverage points (e.g., institutional resources and leadership support) to ensure that system improvements, and the research around them, can be successfully implemented [6,7].…”