Created: James Gardner, 2016-02-14
Audience: Community
Maturity: Planning
If you have a question, please ask and we'll add it to the list and try to answer it. If you aren't happy with and answer to a question, please get in touch and let us know why - it might be that we've missed something important that we can change!
OpenTrials started as a collaboration between Ben Goldacre and Open Knowledge, but there are now lots of people involved. We have a respected Advisory Board, a Technical Team led by Paul Walsh, James Gardner our Community Manager, and Emma Beer keeping us all on track as Senior Project Manger.
There are also people from the wider community who are helping advise us and we are talking to organisations about the possibility of them sharing previously not-public data with us.
There is some public data, but we'd like to see all the data and documents that form the evidence-base of modern medicine. AllTrials is an organisation that explains why this is needed.
Much of the information that is available in public registers or published online is hard to find and not threaded together in one place to make it easily accessible. Just as WikiPedia provided the infrastructure for people to put our knowledge together in once place, OpenTrials will provide infrastrucutre that allows the medical community to make research evidence available in one place.
This will hopefully mean more data will be published, more people will look at it and we'll have better medicine as a result.
It is true that other communities have tried to tackle different parts of the problem. We think we're the first to try to get all data and documents in one place, and to do so in a community-sponsored open fashion, with the community itself have the ability to get involved in the project and its governance.
We've got a great team of people who are used to working on open technology and building open communities, and we're led by a well-known and well-respected Principle Investigator in Ben Goldacre.
Perhaps most importantly, we think the timing is right for this and both the public and industry demand it. The AllTrials campaign has made huge progress in making the idea of publishing these documents the normal thing to do, so we're want to provide the easiest place for providers to publish them, and the most accessible place for doctors, patients, researchers and others to benefit from them.
NOTE: If you've been involved in a related project in the past though, we'd love to hear from you so we can build on your experiences and not re-invent the wheel. We'd love to know what X, Y and Z actually are if we don't know about them already!
Yes, they should, but after they've done that they should publish it for everyone else to benefit from too. Most organisations agree that 1 year is enough time for them to do this.
At OpenTrials we're concentrating our efforts on encouraging members of the community to publish their trial data and documents in a single place so that people can find and use that data.
We also want to see all that data linked (in the sense that you can click buttons to explore the data and documents over the web in a threaded way) and to provide APIs that our community request for building useful apps with that data (likely to be JSON over HTTP). See Threaded Data to learn more.
Linked Data is also a technical term for a set of technologies including RDF and SPARQL. Its value lies is in the fact that it makes data more accessible to machines for automated reasoning.
We wouldn't want to miss out on the very real and immediate value of making trial data and documents available to doctors, researchers and the public by diverting too much time to more advanced techniques for machines at this stage.
We want to be driven by what our community need though, so if you need specific data in linked data formats, or you have data to provide that is already well-modelled with RDF, do get in touch with our technical team.
We're taking the approach recommended by Sir Tim Berners-Lee that has been used in open governement data which is that initially, any data publicly available is better than no data.
Over time, people will submit corrections, and more data will be made available for compairisons, driving data quality further. We don't want to let initial data quality concerns prevent us starting the cycle of publication and improvement.
This is something we'll closely monitor though as the project evolves and any issues that come up are raised.
## Breadth or Depth-First Population