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.....
.....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.
0 comments :
Post a Comment
Your comments?
Note: Only a member of this blog may post a comment.