The NIHR aims to improve the health and wealth of the UK through research. Its mission is to provide a health research system in which the NHS supports outstanding individuals working in world-class facilities, conducting leading-edge research focused on the needs of patients and the public.
The NIHR supports research from laboratory bench to bedside for the benefit of patients and the economy. It works with patients and the public to shape the research agenda, finding new ways of preventing, identifying and treating ill health, evaluating the effectiveness and impact of new healthcare treatments, and ensures that the best possible evidence is available to inform decisions about health and social care.
The HIC is a collaboration between five leading NHS trusts, each of which has a strong relationship with a partner university. These relationships have been strengthened and supported by the NIHR, in particular through the establishment of NIHR Biomedical Research Centres (BRCs) within each trust. It is the BRCs that provide the focal points for the HIC collaboration, bringing together clinical, scientific, and informatics expertise at each trust to improve the quality and availability of patient information.
The aims of the HIC are:
To establish and maintain catalogued, comparable, comprehensive flows of patient data at each trust.
Catalogued, in that the context of collection, the intended interpretation, or the provenance of the data is properly recorded and understood.
Comparable, in that unnecessary differences in the way in which data is recorded, processed, and represented are reduced or eliminated.
Comprehensive, in that the flows contain all of the core information needed for high quality care, service evaluation, and translational research.
To create a governance framework for data sharing and re-use across the trusts and partner organisations, including:
a data sharing agreement, allowing for the transfer of identified and/or identified information between trusts.
an agreed publication policy, ensuring that contributors across the collaborative receive appropriate credit.
a shared approach to research collaboration and intellectual property, streamlining the process of data re-use for scientific progress and patient benefit.
An additional aim is to demonstrate this new capability – the data flows and the governance framework – through the delivery of a number of exemplar research studies, one in each of five specific therapeutic areas.
The HIC was formed by five NHS trusts, each with a university partner:
Three other NHS trusts are working with the collaborative:
Royal Marsden NHS Foundation Trust
Kings College Hospital NHS Foundation Trust
Royal Brompton & Harefield NHS Foundation Trust
The development of the HIC capability has focused on five therapeutic areas, chosen for their importance to patients and the NHS and also for the different challenges that they present in terms of data quality and availability:
acute coronary syndromes
Each of these areas represents a current theme of HIC activity.
The success of the programme has led to an increase in scope, with data now also being collected for prostate, breast, colorectal, and lung cancer. Data is also being collected on a wider range of infectious diseases.
In addressing data quality and availability in these areas, the HIC partners have been able to build upon work by the following organisations:
Hepatitis C Virus Research UK (HCV UK)
NHS Blood and Transplant (NHSBT)
Intensive Care National Audit and Research Centre (ICNARC)
Myocardial Ischaemia National Audit Project (MINAP)
National Cancer Intelligence Network (NCIN)
UK Research Reserve (UKRR)
Bloomsbury institute of Intensive Care Medicine (BiICM).
Effective research by companies such as those making medicines and medical equipment is vital for improving treatments and outcomes for patients. There is a real opportunity to enhance the work of these companies by making available high quality and relevant clinical data, which has been collected in standard ways to help comparison. Through the NIHR HIC, prospective research partners are able to work with its members to determine the feasibility of specific studies.
A key benefit is the ability to combine the patient populations across the different organisations for each research theme. Where a study is feasible and ethical approval is obtained, the ability to form patient groups rapidly across multiple organisations – and to draw some or even all of the clinical data required from existing information systems – greatly reduces the cost of execution.
Electronic patient records hold detailed information about patients' life circumstances, their medical history, and the treatment they receive. This information is needed by frontline healthcare professionals for the delivery and continuity of care. When collected together, it is also extremely useful to health planners in assessing what services are needed and what improvements could be made and by researchers working to turn scientific progress into patient benefit. By improving the quality and availability of electronic patient records, the NIHR HIC contributes to improving patient outcomes, reducing the costs of care and accelerating health research.
There is a wealth of information available about the diagnosis of patients, their treatment over a period of time, and the outcomes that they experience. A key challenge for researchers is that this information is held in many different IT systems, which need to work together to provide the fullest picture of what has happened, and what has been effective or not. The NIHR HIC is working on ways to pool data from operational systems into central stores more effectively, and develop different tools and techniques to review, analyse and present the data in different ways.
Information is captured in different settings and held in different ways, but in order to be able to draw reliable conclusions it is vital to be able to compare like with like. The NIHR HIC is helping to check that data can be sensibly compared by creating different data models across the patient journey, from initial diagnosis to eventual outcome. This helps to identify ways in which data may need to be adapted in order to enable effective comparison and provide more assurance that conclusions are sound.