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Sharing research data: Board states our position

February 12, 2016

Yesterday our Board of Trustees met to discuss in detail Action for M.E.’s position on a range of issues relating to the charity’s work and its future strategy.

As part of this, the Board considered the charity’s stance in relation to the sharing of data from research. They considered the wide range of views shared with the charity by people affected by M.E., and the expert scrutiny of the Information Commissioner, who identified principles in relation to the sharing of data collated as part of the PACE Trial.

In the interests of transparency, Action for M.E. supports the sharing of research data to enable replication and validation. As a point of principle, it is important that research data is used to its full potential and that as much benefit as possible is derived from it. This means that the investment in collecting and producing data should be maximised by enabling other researchers to analyse the data and generate more research findings.

In light of this, Action for M.E. strongly supports the release of anonymised data from the PACE trial. 

We understand that Queen Mary University London (QMUL) has stated its interest in hearing the views of people with M.E. and so we will be writing to them to outline the charity’s position. We would encourage any individual with concerns regarding the release of PACE trial data to please contact QMUL for information. Individuals who require support with this can contact us should they wish to. The Board is continuing to consider Action for M.E.’s position on the PACE trial and related issues more widely, and will make a further statement in due course.

In addition, the Board has agreed that any future research will only be funded by Action for M.E. if the researchers agree to share, appropriately in an anonymised form, their raw data, in line with the protocol set by their academic institution.

All future research contracts will now include this as a specific condition of funding. Being clear contractually from the outset about the sharing of appropriately anonymised data offers an umbrella under which researchers can work with integrity. While we only have the remit to enforce this within the context of our own funded research, we feel this is a positive move towards transparency, clarity and collaboration.