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30 April 2021

KID and KeRNEL: integrated data resources for health and care research

The Health Economics Unit (HEU) is working with the integrated data team that works collaboratively across Kent and Medway to promote and facilitate access to its extensive integrated dataset for health and care researchers across the NHS and beyond.

The Kent Integrated Dataset (KID), the brainchild of Dr Abraham George, a consultant in Public Health at Kent County Council, is one of the largest integrated health and care databases in the UK, covering the health records of more than two million people. It includes data from 240 GP practices, acute trusts, adult social care, mental health services, public health and community health.

It is now available for use by researchers across the NHS, with support from the Health Economics Unit (HEU), who can help with honing their access applications to make the most effective use of this unique resource.

About the KID

Over the last seven years a successful collaboration between Kent County Council, University of Kent and East Kent Hospitals University NHS Foundation Trust has developed a leading reputation for the creation of linked data for the purposes of planning, evaluation and research.

The original aim of the KID database was to link datasets from different providers to track patient journeys longitudinally over five to ten years, which Dr Marc Farr of the data team says was quite novel at its inception.

“Thanks to the datasets we’ve added over the years, we can now offer analysis opportunities that span organisational boundaries, integrating health and care de-identified data from cradle-to-grave,” he explained. “This enables whole pathways to be analysed, including the evaluation of services and interventions and the impact they have on patient outcomes and the system as a whole.”

The KID includes data on the commissioning and providing organisations, the service and treatment received, cost and staffing, plus patient diagnosis, demographics and location.

It has already been used extensively for local and national research. For example, NHS England has used it to calibrate its national funding model, meaning that £28 billion of spend has been calculated using the direct input of the KID.

Accessing the KID

The datasets within the KID are linked using the NHS number as a common patient identifier then de-personalised. All data is hosted and analysed within the Health & Social Care Network (HSCN) meaning that analysis of this de-personalised record level data must be undertaken by analysts with permitted access to this NHS hosted safe-haven.

The Health Economics Unit liaises with the Kent data team to facilitate such access, either by helping researchers to refine their requests or by checking whether the dataset is likely to contain the information they need before they make an application for access.

Coming soon – a bold ambition for KeRNEL

Using the data feeds which inform the KID as one of its foundations, the Kent team will soon launch the Kent Research Network for Education and Learning (KeRNEL) dataset. This new resource will expand the breadth and depth of the KID through the use of additional clinical datasets and by drawing on information resources from an even wider range of NHS and partner organisations.

Marc explained: “This will be an incredibly rich dataset, which won’t just include the standard NHS data but also reach down, for example, into early warning scores for clinical deterioration, cut-to-close times in wound care, and possibly even Articifical Intelligence (AI) scanning of free text. We are also expanding our source databases, reaching out to the police, social services and for information on free school meals and air quality for example. It may even be that people can agree to share data from their wearable devices such as FitBits and Apple Watch.”

Key to the KeRNEL resource will be that patients can be re-identifiable (by approved users and with consent). This means that if a piece of research identifies a person as being particularly at risk of a negative health outcome, their GP or other approved clinician could alert them to this risk and offer an appropriate intervention.

Marc said: “While the KID is a traditional, anonymised longitudinal resource, KeRNEL will be updated every night or possibly even in real-time so that users can utilise it for performance and planning, for example looking at numbers of ambulances waiting, A&E attendances and hospital admissions.

“It will also be useful when evaluating an intervention as researchers will be able to separate out a patient cohort that has received a particular intervention and compare it with another that hasn’t, making it evaluation-ready.”

Marc added that his team is always looking for new datasets to link into KeRNEL. They are, for example, negotiating access to cancer data and local maternity datasets that give much more information on treatment received.

Working with the Health Economics Unit

Marc explains that the partnership with the Health Economics Unit came about to help clients to analyse the data and create reports that meet their needs.

Julia Wilkins, Head of Data and Analytics, said: “Marc and his team have a strong local network of research and governance relationships between providers, clinicians, universities, researchers and so on, and can encourage them to share information for the common good.

“We add to that with our extensive experience of navigating and working on real-world datasets. We can help potential clients to submit appropriate applications to the information governance review panel, and then following approval, analyse the data to create aggregated reports aligned to their needs.”

Marc added: “The Health Economics Unit has greater experience on the potential for how the datasets can be used – our team are the miners of raw material; Julia and team have the insight into how that material can be used and how it can be linked to other data sources in meaningful ways. By working in partnership, we can each concentrate on the areas we’re best at.”

Next steps for researchers

A governance structure is in place to manage access to the KID and any project requiring access must have an NHS clinician as a principal investigator. There are fees for access, which contributes to the maintenance and further development of the KID.

Applications for access should be made by emailing HEU.admin@nhs.net. We will be happy to answer any questions, provide relevant patient cohort numbers available for analysis and offer advice on how to complete applications for submission to the Information Governance Review Panel.

If required, we can also provide a costed proposal for analytical and health economic services including:

  • Feasibility – developing a clear and defined question, and then providing an assessment of volume and quality of data aligned to the client’s needs
  • Literature reviews
  • Whole system pathway analysis
  • Health economic evaluation and modelling
  • Creation of business cases
  • Contribution to funding bids
  • Writing manuscripts for publication
  • Creation of interactive visualisations.

The KeRNEL will shortly also be available for access. You can get further information by contacting us or emailing HEU.admin@nhs.net, marc.farr@nhs.net.

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