Good news on the Open Data front. The UK’s House of Commons Science and Technology Committee are currently calling for evidence for a new hearing into the implications of missing clinical data (http://tinyurl.com/artfwq2
) to the NHS and patient safety.
The BMJ has highlighted a few drugs of concern, most notably Tamiflu. However we are very aware that they are just the tip of the iceberg. To show the true scale of the problem we want to collate an exhaustive list of drugs where data has been hidden from public scrutiny.
This is where we need your help: We are appealing to academics and doctors internationally to assist us in crowdsourcing the best possible information.
We would like to see any report of any obstruction, from any researchers or companies, which you are aware of. This can be from your own work, the academic work of others that you have read, or media reports. Our remit is broad.
Examples we have already collected are publicly available here - http://tinyurl.com/ag6zsl8
. We will collate and maintain this information as we receive it.
Examples of things we would like to receive are:
• A systematic review you have read containing comments on obstructiveness or outright refusals from companies or researchers.
• A piece of research you have been involved in where the company delayed/prevented publication or restricted access to data.
• A news story you are aware of describing results being withheld, or only coming to light many years after the study completed.
Fill in this form online. All submitted material requires a verifiable source and before posting we will authenticate it and then add the information to our data set.
Our aim is to then to submit all or part of this set to the committee by the by noon on Friday 22 February 2013