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Data sharing: population and patient studies

MRC policy on sharing of research data from population and patient studies

This policy and guidance (PDF, 512KB) provides detailed requirements and expectations for individual studies to meet the overarching MRC policy on research data sharing - the council’s principles for data sharing that apply to all MRC-funded research.

Our overarching aim for data-sharing is to maximise the life-time value of research data assets for human health and to do so timely, responsibly, with as few restrictions as possible, in a way consistent with the law, regulation and recognised good practice.

The policy and guidance were drafted specifically for the population health sciences and population and patient cohorts. It was our expectation that all studies with on-going data collection or analyses should be able to show progress towards meeting the requirements by 30 May 2012.

Background

Research to understand human health and evaluate interventions to improve health is dependent on information about the health, lifestyle, genetics, social, economic and physical environment of populations and patients.

Such data provide many opportunities for collaboration across diverse research disciplines. Longitudinal studies with repeat observations of cohorts of participants - often over many decades, are particularly rich resources for multi and interdisciplinary investigations of development, ageing and the effects of early circumstances on health in later life.

The data involved are diverse and collected by a variety of different means including survey questionnaires; direct measurements on people; tests on biomedical samples; and clinical and other records.

The value of information collected from study participants grows as data are organised, ‘cleaned’, quality controlled, analysed and outputs of the analyses are made accessible to research data users. Considerable value is created through the data lifecycle.

Creating the value in these data represents a substantial commitment by the researchers, study participants and funders involved. Many players have an interest in well-managed sharing of high value research data.

The MRC and other leading research funders actively promote research collaboration and data-sharing with the aim of maximising the value of these resources for the public good.

Researchers share rich data resources in a variety of ways; for instance, answering new questions with existing data, validating a finding from one study by attempting to replicate the finding in another and combining the power of individual studies that share common features through data linkage or meta-analysis.

Purpose and scope

This policy and guidance was drafted specifically for the population health sciences and population and patient cohorts. It is based on key principles widely recognised as applicable to publicly funded research in general: OECD Principles and Guidelines for Access to Research Data from Public Funding and RCUK Common Principles on Data Policy.

The requirements should also readily apply to clinical trials, while recognising that trialists may already have satisfactory arrangements in place (eg for trial discovery) that the expectations in this guidance do not seek to perturb.

The guidance has been prepared specifically for study directors, informaticians, data managers and peer reviewers to enable the MRC research community to meet MRC policy requirements and expectations. It is the responsibility of the study director or unit director to meet the requirements for his/her studies. Units may develop a single set of measures for all their studies.

Studies may share their data by archiving their data collection (or a subset) at a discipline-based repository, for instance the UK Data Archive which serves the wider social sciences community, or at an institutional repository that can preserve the data and make them available to users. This may be particularly suitable for legacy data collections and for studies that no longer actively collect data or receive funding.

The guidance does not provide technical guidance for data managers on how to manage data or which data standards to use. However, links to such information are provided.

The guidance does not replace the need for investigators, data managers and others to use professional judgement and draw on other appropriate sources for advice.