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Friday, April 15, 2016

OpenTrials: what, why and how? - blog

On Medicine
 14 Apr 2016

We’ve recently published a paper in the journal Trials on something we’re building right now. It’s an ambitious idea, and long overdue: OpenTrials, an open, freely accessible index of all publicly accessible documents and data ever made available, on all clinical trials ever conducted.

The messy world of clinical trials

You might find it surprising that such a thing doesn’t already exist. But the world of clinical trials is currently in something of a mess, as is increasingly recognized, especially when it comes to knowledge management.....

(BioMed) OpenTrials: towards a collaborative open database of all available information on all clinical trials

 .....The presentation for patients (Fig. 2) is limited by the quality of the data currently available for this audience, but it has significant potential with greater user engagement. For example, we can present search options for ongoing trials for a given condition or a given drug, covering a given geographical area, filtered if necessary for an individual’s eligibility by comparing their entered demographic information against structured data on the inclusion and exclusion criteria of each trial, where data quality permits. Previous efforts to do this have been hindered by the variably poor quality of information on registries for non-specialist users. Here there are many opportunities. The first is from record linkage. For example, all trials must pass through an ethics committee, and all ethics committees require a lay summary. Where we can match the lay summary from ethics committee paperwork, we can present it on the patient-facing page. The second opportunity comes from using the option of crowd-sourcing and annotation, as we can also permit others to upload their own lay summaries. To this end, we have begun negotiating with science communication course leaders to work with them on using this as an exercise for their students, and are also keen that methodological shortcomings in ongoing and completed trials be communicated clearly to patients, with a view to developing a good trials guide. Here, as with other additional features to the core service, our efforts will be driven by opportunities for collaboration.


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