The National Institute for Health Research Clinical Research Network (NIHR CRN) is delighted to be joining the UK Health Data Research Alliance. Our unique data and expertise will make an important contribution in the collective effort to improve clinical research across the nation. To explain how this can happen, we need first to explain a little about the data we hold and the work we do.
The NIHR CRN maintains data in order to help coordinate a national portfolio of clinical research. The datasets we hold are used to manage core study information, capacity and capability data, study site information, research activity data and research management information. In addition, the NIHR’s annual research statistics – published at the beginning of each financial year – provide the most comprehensive data around the state of health research across England.
Our Central Portfolio Management System (CPMS) holds 10-years worth of data on more than 26,000 studies that have recruited in excess of 9 million participants. We are able to analyse this data by, for example, location, site type, speciality, phase, funder type, study design, geographical scope and funder type.
More recently, we’ve had great success in linking this data to other datasets. This has enabled us to, for example, analyse research activity data in relation to disease prevalence (through linking data shared by Public Health England), or admission rates (by incorporating NHS England data). This work has been incredibly helpful in enabling research to be targeted at areas of unmet need – a key priority of the Chief Medical Officer who chairs the NIHR Strategy Board.
The CRN’s Open Data Platform (ODP) is a Business Intelligence (BI) Platform. It is used by more than 3,000 researchers, academics and healthcare professionals to visualise our research data in creative ways. For example, the ODP Research Targeting Tool is now used to help place research studies in areas of high prevalence of disease.
Image from the NIHR’s Open Data Platform, Research Targeting Tool
The CRN also manages the Be Part of Research service which allows people of all ages and backgrounds, from all over the country, to take part and help shape research. Recently the BPoR team has worked closely with NHS Digital to develop the Coronavirus consent to contact service. This new research registry forms a crucial part of the work of the Government’s Vaccines Task Force that will help us accelerate the recruitment of research participants to vital vaccine trials, right across the country.
As an organisation, we realise the power of linking data and organisations together. As a network by design, we have expertise in working across boundaries (every single NHS trust in England is involved in supporting NIHR CRN research) and using data in creative ways to give insight and to aid decision making.
We are certain that by joining the UK Health Data Research Alliance and by opening up our knowledge, network and data further, we can help HDRUK to thrive and really make a difference to people who deserve access to research. We can’t wait to get started.