UK Renal Health Data Research Network
The UK Renal Health Data Research Network (UKRHDRN) aims for better use of renal health datasets, to improve renal care and enable future research discoveries.
The network is a source of expertise and experience in health data research and strives to develop collaboration between groups and individuals doing research on kidney diseases using large datasets. Its goal is to reduce the burden of kidney disease and reduce inequalities in kidney disease and its treatment.
The group, and members of the UKRHDRN, have an interest in renal health data research and expertise in one or more of:
- data governance
- routine data analysis (primary care, hospital records, national data linkages, lab data records)
- existing renal registries
- health economics
- patient reported outcomes
- epidemiology or pharmaco-epidemiology
- lived experience as a kidney patient.
- Draw on expertise from the data research community and other stakeholder organisations, including the UK Renal Registry, Health Data Research UK networks and the BHF Data Science Centre to identify gaps in knowledge and explore the potential of data to generate new studies that can and should be undertaken in the UK.
- Undertake research activities to contribute to the evidence base in line with the UK Renal Research Strategy and its recommendations for renal research outcomes.
- Undertake horizon-scanning to map out current datasets and their metadata plus current data linkage across the UK.
- Act as a point of reference and a source of expertise and experience in health data research (e.g. issues relating to access and governance) to support other groups and networks in the design and delivery of quality research, leading to successful funding applications and publication.
- Help to ensure any published health data research is seen through to broader and sustainable clinical utility and implementation to improve prevention, diagnosis and healthcare of kidney patients including where health inequalities exist.
- Encourage, advance and support multi-disciplinary, multi-centre, grant application activity in data research.
- Ensure patients and carers are core members of the network and are integral to the design, delivery and dissemination of health data research.
- Support education, peer support and mentoring for trainees and early career researchers in data science to build future capacity for health data research.
- Collaborate with wider stakeholders to leverage funding and influence relevant funding bodies to strengthen opportunities for health data research activity.
- Work with the commercial sector where there is a clear clinical need and defined clinical outcomes to maximise the use of data for the benefit of patients.
- Improve the efficiency and the potential to improve outcomes for kidney patients to facilitate data linkage and to influence relevant policy makers.
- Provide endorsement of a project’s health data management plan by appointing and running a UK Renal Health Data Research Review and Endorsement sub-committee.
Kidney Research Data Portal
Health data is an important resource for supporting much-needed progress in the management of kidney disease, with multiple datasets currently in existence at different locations across the UK. Many researchers will not know what information is held by other teams, or have a simple way to access it, limiting vital research.
The KRDP brings details about these datasets together in one searchable listing, allowing researchers to maximise the discoveries from each dataset.
If you feel the network can support your ideas or projects, please get in touch.