14 December 2015
Making data available after a research study is complete helps to ensure the widest public benefit, allowing other researchers and the public to scrutinise the information, and encourages its re-use.
Additional issues to consider when making data available include ensuring that:
- Patient confidentiality is protected and that data is published with their consent
- The data sets and methodology are accessible in a useable format for researchers
- The originating researchers have time to analyse the data before making it publicly available
- That data sets linked to negative results are also published
- That secondary analyses of data refer to the publication where the data were first analysed, and are linked to the original data
- AMRC and our members are working with the Health Research Authority, the pharmaeutical industry, and UK and EU regulators, to ensure that the legal and regulatory framework for medical research allows appropriate transparency
- All clinical trials involving NHS patients should be registered before the first patient is recruited
- AMRC members expect the researchers they fund to comply with EU law to register their studies on the EudraCT clinical trials database and publish clinical data for trials submitted to the European Medicines Agency
- Some pharmaceutical companies have made their clinical data available to researchers for secondary analysis
- AMRC supports the All Trials Registered, All Results Reported campaign.
Quality and standards
- Many medical research charities ask researchers to outline data management and sharing plans when they apply for funding