At our recent annual conference, we started to explore what a learning health care system might look like in the UK, shared examples of emerging models from across the globe, and looked in depth at some of the elements that could contribute to creating one.

The Institute of Medicine defines a continuously ‘learning health system’ as one in which, ‘science, informatics, incentives, and culture are aligned for continuous improvement and innovation, with best practices seamlessly embedded in the delivery process and new knowledge captured as an integral by-product of the delivery experience.’ The concept builds on thinking in fields such as quality improvement, informatics, health care policy and improvement research. It articulates how these approaches can work in harmony to accelerate improvements to the quality of care.

At our conference we explored some of these elements and how they can contribute to improving care, including through:

  • digitisation and analysis of data and information
  • harnessing the energy of people through building networks and skilling people with quality improvement techniques
  • creating a context conducive to improvement through designing incentives and new care models. 

In this article, we share some of the discussion and insight our conference generated on the areas of digitisation and data, and building networks for improvement.

Powering improvement through digitisation and data

To discuss the role of digitisation and data analysis, we were joined by a panel of clinicians who talked about the role of data, audits and registries, and how they can be used to make care better.

Professor Danny Keenan, the Medical Director of the Healthcare Quality Improvement Partnership (HQIP), made the case for using information within national clinical audits and registries to inform improvements to patient care. He suggested that much of their potential comes from high levels of clinical engagement and the rich information (relevant to both the research and improvement communities) contained within them on processes of care, treatments and patient outcomes. They are particularly relevant when the focus is on improving the quality of care along clinical pathways, Professor Keenan said.

Dr Maziar Mohaddes, Consultant in Orthopaedics at Sahlgrenska University Hospital, demonstrated the power of data, including patient reported outcomes, collected as part of the audit system in Sweden to support learning between and within clinical teams with the aim of improving care for patients undergoing hip surgery at the hospital. Dr Mohaddes outlined their work to create a balanced scorecard putting together patient reported outcomes with process and cost measures. He discussed how using the scorecard enabled them to identify areas for improvement, and put in place changes to make care better. He also demonstrated improvements across clinical and patient reported outcome measures seen by Sahlgrenska since 2009.       

In the UK, innovative audits such as the Sentinel Stroke National Audit Programme (SSNAP) are drawing on developments in digital technology, data analytics and visualisation, and user centred design, to improve the experience of those submitting data to the audit and also using its outputs, Dr Ben Bray, Research Director for SSNAP, said. He argued that effective audits should be seen as being more than data in, data out, but rather be seen as large-scale behaviour change interventions, which aim to influence the behaviour of individuals and organisations, helping them to learn how to improve the quality of health services. The data in SSNAP are collected in near real-time, he explained, and users can access reports that can be used to benchmark services, monitor progress, celebrate success and identify areas for improvement.

Building networks for improvement

While developing a learning health care system means making the most of the opportunities presented by digitisation and analysis of data, on their own they aren’t enough. Realising these benefits is only likely if improvements to care are developed with patients and professionals, continually informed by and adapted to their needs, preferences and experiences. One way of achieving this is through harnessing the knowledge and energy of people through peer communities and networks, and applying the skills and knowledge of clinical professionals, patients, quality improvers, analysts and researchers. 

Dr Peter Margolis, Professor of Paediatrics at Cincinnati Children’s Research Foundation, shared his experience of developing a network in the US to transform outcomes for children with inflammatory bowel disease (IBD), such as Crohn’s disease or ulcerative colitis.

Improve Care Now grew from a network of paediatric gastroenterologists, who were working together to improve care for children with rare childhood conditions such as Crohn’s disease and ulcerative colitis. It was, in part, set up to bring together experiences of rare childhood conditions, as no single institution had enough patients to generate suitable sample sizes to draw broader knowledge from.

The network includes the following elements: harnessing large electronic health and health care data sets; the formation of communities of patients, families, front-line clinicians and researchers to produce and use these data; observational research and clinical trials done in routine care settings; and quality improvement at the point of care.

Today the network includes 95 care centres, 900 doctors and 27,000 patients (about 55% of all children with the condition in the US). Since it began, the percentage of children in remission has risen from about 60% to over 80%.

When establishing the network, ‘Our overarching goal was to produce a holistic design – where the central concept is that the clinical care, quality improvement, and research, are viewed as part of a single system,’ said Dr Margolis. To encourage a flexible and adaptive system, he said there are four principles to keep in mind:

  • An unrelenting focus on outcomes, creating a sense of shared purpose among stakeholders and motivating people.
  • Build a community using formal methods and develop a culture of generosity and sharing.
  • Effective use of technology to decrease the time, effort and money required to participate.
  • Bring together a variety of scientific approaches – system science, quality improvement, qualitative methods and clinical research – to produce the new information that can then be used in practice.

And one of the biggest challenges? Learning how to lead in a collaborative, cooperative system. For Peter, ‘Leading in these kinds of communities is a lot more like cultivating a garden than driving a car.’

To find out more, watch Peter’s presentation on our website.

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