Data generated through participation of patients and the public should be put to maximum use by the research community and, whenever possible, is translated to deliver patient benefit.
Data sharing benefits numerous research-related activities: reproducing analyses; testing secondary hypotheses; developing and evaluating novel statistical methods; teaching; aiding design of future trials; meta-analysis; and, possibly, preventing error, fraud and selective reporting.
HTA Programme: (see http://www.hta.ac.uk/funding/troubleshooting/index.html)
The HTA programme does not prescribe when or how researchers should share data. Some data can be shared pre-publication, whilst the value of other data may only be realised after the collection period. The HTA aim to prompt researchers to consider what is appropriate and reasonable and make explicit provision for sharing and preservation in the planning and execution of their research.
Medical Research Council: (see http://www.mrc.ac.uk/Ourresearch/Ethicsresearchguidance/)
In 2001 the MRC launched an initiative to promote new and extended use of research data generated by MRC-funded researchers. The focus is on preserving data so that it can be shared and re-used by scientists other than the originating research teams. All scientists applying for MRC funding must now include a strategy for data preservation and sharing in their research proposals.
Wellcome Trust: (see http://www.wellcome.ac.uk/About-us/Policy/Spotlight-issues/Data-sharing/ )
All funded researchers should maximise access to their research data with as few restrictions as possible. It requires applicants whose proposed research will generate data that hold significant value as a resource for the wider research community to submit a data management and sharing plan as part of the application process.
Data sharing achieves many important goals for the scientific community, such as:
• reinforcing open scientific inquiry
• encouraging diversity of analysis and opinion
• promoting new research, testing of new or alternative hypotheses and methods of analysis
• supporting studies on data collection methods and measurement
• facilitating education of new researchers