In March, the United 2 End MND patient group sent Freedom of Information requests* to the 4 universities who were part of the Mirocals trial: Sussex University, King’s College London, Sheffield University and Queen Mary University of London.
*note – charities are not covered by the Freedom of Information Act 2000 and so we were not able to send the request to the MND Association.
Public authorities in the UK are covered by the Freedom of Information Act and as such can be requested to release information that they hold.
This includes all recorded information held by a public authority and is not limited to official documents. It covers, for example, drafts, emails, notes, recordings of telephone conversations and CCTV recordings. Nor is it limited to information created by an authority. It also covers, for example, letters received from members of the public, although there may be a good reason not to release them.
We asked for the Mirocals trial results or any documents relating to the results. We emphasised that this was a trial funded by taxpayers and charitable donations, and that people with MND do not have time to wait. We highlighted that the normal expectation for publication of trial results is within 1 year of the trial ending and it is now almost 2 years since the Mirocals trial ended. We also challenged the idea of commercial confidentiality given ILTOO have not invested any money!
The four universities replied within the requisite 20 business days and said that they would not release the data. The responses included:-
“It is expected that the research paper will be ready for publication within the next 4-6 months”.
“Analysis, checking and auditing of the trial data is not yet complete“.
To “release this incomplete data, outside of the terms of the consortium agreement … would be likely to prejudice our ability to secure research partners and funding in the future”.
The release of the information “would be likely to prejudice the programme of research, the interests of the University and/or the interests of other authorities which hold relevant information”.
Of further interest, within the additional response from King’s College Hospital Trust, is the following statement:
“As MIROCALS has licenced the data to ILTOO, releasing more detailed data than is present in abstracts (as on the slides, or otherwise) contravenes the licence agreement.”
We invite readers to interpret what they may from this statement. Does it confirm the community’s suspicion that the commercial granting of the license is causing the delays?
We are incredulous that the paper is still up to 6 months away. How many times have we been promised publication for it to not happen? We also note that the ‘consortium agreement’ and the interests of the universities and ‘other authorities’ take precedence over the lives and dignity of people living with this horrendous disease.
We are challenging the responses, as is our right, within 40 days, with requests that the authorities fully explain their answers. While they still may not get us the answers we need, the requests are based on expert legal advice to ensure we get as much information as we can from the universities.
We also intend to submit FOI requests on the commercial aspects of Mirocals to the Universities.
We welcome any comments from the community.
For completeness here are PDFs of the full responses from the Universities.
King’s College University and King’s College Hospital Trust
Queen Mary University of London
and the following items referenced in the King’s College Hospital Trust response:
Association of British Neurologists meeting 2023
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