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Strategic Aim Four - Use of population-based data

Data are at the heart of the MRC’s ability to improve the understanding of human health. To maximise the exploitation of MRC data sets, it is important to ensure that the MRC plays a strong leadership role in the development of informatics and infrastructure that enables the effective use and analysis of MRC data. We must recognise that the maintenance and development of population cohorts and the data sets that flow from them need active and effective management across discipline boundaries.

Objective

To exploit fully the complexity and benefits of population-based data; to maximise sharing and linkage of data, and to develop data collection and storage.

Now

Large long-term population-based data sets or cohorts are an essential resource for health research, in which the MRC has invested significantly, often in partnership with other funders. Although the benefits and rewards of cohort investments can take several years to come to fruition, investment in these data sets over the last 60 years now puts the UK in an unrivalled position internationally with a number of unique, high-quality data sets which cannot be easily replicated.

  • Developments in information technology, particularly the capacity to handle ever increasing quantities of complex data and the potential of the NHS Connecting for Health programme, provide new opportunities for ‘big science’ through data pooling and data linkage.
  • We also have funding initiatives to promote data sharing and to maximise the use of existing data sets (National Prevention Research Initiative Phase II call for proposals. March 2007; Wellcome Trust/MRC/Economic and Social Research Council/Engineering and Physical Sciences Research Council Electronic Patient Record Databases call for proposals September 2007; MRC licence to use the GPRD database. December 2005) and we are developing strategy across UK funders to develop a UK-wide framework for population-based research.

Future

Through strategic enhancement and additional resources to facilitate data pooling and linkage to other data sets, the MRC aims to enable the use of population-based data sets for the laboratory, clinical and population health research community. This will be not only to understand better the basis of health and disease but also to develop new ways to diagnose and prevent common diseases.

  • We aim to play a pivotal role in ensuring that the rich and unique data captured within large population-based data sets are used to their maximum potential. UK researchers will be able to address complex questions about the major social, genetic and environmental determinants of health and disease.
  • We aim to develop methods to enable increasingly large and complex data sets to be assessed, evaluated and synthesised for research; to improve the conduct and increase the efficiency of clinical and population-based research designs. The major funders of health research in the UK, under the auspices of the OSCHR e-health board, are currently developing an e-health research framework.

How

The MRC will build on a number of initiatives and strategies including our policy on data sharing and preservation and the MRC Data Support Service. We also have funding initiatives to promote data sharing and to maximise the use of existing data sets and we are developing strategy across UK funders to develop a UK-wide framework for population-based research.

  • We will address scientific priorities and stimulate cross-disciplinary working through strategic investment in the most appropriate data sets.
  • We will achieve cultural change so that data-sharing and better data access become common practice.
  • We will proactively manage existing and new population-based cohort investments in partnership with other funders.
  • To understand and address methodological issues that arise from linking and combining data sets, including those that arise from cross-disciplinary collaboration, we will support research.
  • We will provide leadership in data-sharing and data access policies.
  • To remove unnecessary obstacles, we will implement the recommendations of the Academy of Medical Science’s January 2006 report (Personal data for public good using health information in medical research. The Academy of Medical Sciences, January 2006) on the use of health records in research.