By Tom Foley.
Dr Ingrid Wolfe, Consultant in children’s public health medicine and Programme Director of Children and Young People’s Health Partnership (CYPHP)
Background to CYPHP
CYPHP’s purpose is to improve children’s health through clinical practice, research, education
and training. We are a Partnership of local decision-makers promoting continued health service and system improvement through ongoing learning, evaluation and research. CYPHP’s current programme of
work has two main components:
- Implementation of a new model of care of universal and targeted services to improve health and care for all children in Lambeth and Southwark.
- Building an informatics system that enables collection of health information to shape care, and a research database that enables system intelligence and research.
Our longer term ambition is to embed a children’s LHS into usual practice. This way we aim to maximize health benefit for the local population; and through demonstrating success, to influence ways of working more widely and therefore to improve child health nationally.
The Children and Young People’s Health Partnership is unique in the UK and across Europe in its cross‐organisational, system‐wide, transformative and academically rigorous approach to improving child health services. The programme is designed to deliver significantly better health, better healthcare outcomes, and better value for children and young people, through:
- An evidence‐based clinically effective and cost
effective comprehensive day-to-day healthcare model for children and young
people that meets current and evolving health needs.
- Rigorous evaluation that builds the evidence base for improving children’s healthcare and strengthening health systems.
- A learning healthcare system so that continuous improvement becomes part of everyday practice.
How you define a Learning Health System?
To us, a Learning Health System (LHS) is obvious. It provides the missing link in translational research. It is the way that we should have been working all along – using big data to its maximal advantage for patient benefit. Using routinely collected health and healthcare data from large numbers of children, through public health and administrative systems, and analysing it to drive improvement – continuously. An ideal LHS enables improvement at the individual patient level, and at the pathways and systems levels, and provides the basis for research that is readily applied to local and global populations.
A LHS has an afferent (sensing) arm and an efferent (feedback) arm, with analytical processes taking place in-between. There are four main features of a LHS, which are described below, together with what CYPHP is doing for each component:
- Organisational decision-makers and stakeholders coming together in a forum with a common purpose
- CYPHP is a Partnership comprising local children, young people, and families, Lambeth and Southwark Clinical
- Commissioning Groups, Lambeth and Southwark GPs, King’s College Hospital NHS
- Foundation Trust, Guy’s and St Thomas’ NHS Foundation Trust, Evelina London
- Children’s Healthcare, South London and Maudsley NHS Foundation Trust, Lambeth
- Council and Southwark Council, and King’s College London.
- Big datasets of routinely collected health and healthcare data
- We have built an informatics system that enables evaluation of a new model of care, and is being extended and made sustainable through linking with system wide healthcare provider and commissioner endeavours, and informatics platforms for life course health research.
- Healthcare pathways that enable translation of data into direct patient benefit, shaping services responsively according to need
- CYPHP’s model of care includes chronic care pathways for children with long-term conditions who need care that is tailored to their specific problems. Whole child care that is responsive to need is enabled through a patient portal that facilitates a bio-psycho-social assessment process, and uses the data to shape care accordingly.
- Research in everyday clinical settings for patient benefit and to further knowledge
- A cluster randomised control clinical trial is being conducted as part of the evaluation of the CYPHP model of care. In addition to intervention research, observational studies are planned to take maximal advantage of the infrastructure built for the evaluation.
What work your organisation is doing on Learning Health Systems?
Our definition of a LHS, and what we are doing in each aspect, is described above. The process we undertook to establish CYPHP has put many of the components of a LHS in place:
- We assessed the need for and identified the gaps
in existing services.
- We conducted an evidence review, to establish what might fill those gaps.
- We engaged a wide range of stakeholders.
- We collaboratively constructed a model of care.
This process required extensive data gathering and data analysis examining pathways of care that cross partner organisations. This has helped to establish the basis of a LHS. The next phase is to
5. Implement the model of care.
6. Evaluate it.
7. Demonstrate the utility of a LHS approach to integrate clinical care, health services quality improvement, and research.
8. Embed a children’s LHS into usual practice.
The programme funding will end in 2020 and we hope to have embedded the new model and way of working by then. There should then be a continuous iteration of these steps, however, the real challenge is to pull these components together and build momentum through leadership. This can best be achieved through a clinical-academic partnership.
This work also requires system wide progress in three areas:
- A coherent approach to IG
- Data sharing agreements (that include secondary uses)
- An architecture for using data
CYPHP have a dedicated team that, as well as clinicians and
- A health services analyst
- Quantitative and qualitative researchers
- A database manager
There is a need for further expertise in data visualisation, patient portals, and public health informatics. These skills are available, but funding is a challenge.
There is an intention that this approach will be scalable to other locations, but the focus is currently on building a cohesive team locally and demonstrating utility to enable sustainability beyond current CYPHP funding.
What you see as the big opportunities?
The big opportunities for CYPHP will be realised through building a sustainable local data sharing platform with robust IG agreements, sustaining the partnership of decision makers, and making this approach business as usual.
What other work are you aware of?
The Healthy New Towns initiatives, such as Ebbsfleet Garden City, offer an opportunity to embed the LHS model from the ground up. There is potential to embed the infrastructure to support new models of care and a LHS from the foundation of a new town, for example, through automated data collection embedded in the public realm. It is early days, but there are encouraging signs of joint working, at the system level, between local Trusts and CCGs.
What gaps need to be filled?
There is a real need to demonstrate the value of developing LHS. Currently, it is not easy to articulate or to scale local initiatives. We need to develop a powerful elevator pitch that is backed by robust evaluations and use cases – of the LHS itself, and the benefits this approach to working brings to the local population, patients, and the healthcare system. In summary, we need to work at several levels:
- What does it all mean for the population
(quality of life, health, public health care interventions)?
- What does it all mean for patients (quality of care, etc.)?
- What does it mean at the system level (cost, flow, etc.)?
There is a need for more infomaticians and managers who can collaborate to drive the LHS work. Without these skills and a mutual understanding, LHS initiatives will fall by the wayside.
There is a need for support in developing new opportunities. We see many opportunities to create collaborations, funding applications, etc. but we have to pass on them because we are at capacity delivering business as usual.