Open Data
Health and drug data is increasingly being made available for use by researchers in academia and in industry. The following open data projects are just a few interesting examples I've come across recently.
GSK Clinical Trials Data
GSK is the first pharma company to make a big effort to open up its clinical trials data. I believe this is part of a general trend in pharma to treat more work as pre-competitive. I guess teaming up is a natural response when the underlying system is failing? However, there are a number of restrictions on who can get access to the data. For example:
This closed-access system helps protect privacy and ensures that the data are used solely for approved research purposes.
There is a rationalization in there about potential harm to the public if the data are "misinterpreted". I don't know where this fear comes from. It just sounds like paternalism.
UK Biobank
The UK Biobank is a fascinating resource. It's a government-funded data-collection initiative, with the unusual and exciting proviso that the data be made available not only to academics, but to pharma/biotech too.
During 2006-2010, UK Biobank conducted its recruitment phase of more than 500,000 participants who gave their consent, answered questions, had physical measurements and gave samples (blood, urine and saliva) at a baseline assessment visit. Follow-up of their health is now being conducted through medical and other health-related records. Access systems have been developed to facilitate use of the UK Biobank Resource by bona fide researchers for health-related research that is in the public interest.
The phenotypic data available is quite broad and the prices are very reasonable:
- £250 + VAT (where applicable) payable upon submission of a preliminary application.
- £1,500 + VAT (where applicable) per application that requires access to data only.
- An additional cost of £1,500 + VAT (where applicable) for bulk data access.
- £bespoke quote for applications that request access to biological samples.
- £bespoke quote for re-contact requests.
- £bespoke quote for particularly time-consuming customisation of datasets.
openFDA
openFDA is one of a few fancy government projects that use trendy technologies like github, twitter, bootstrap, etc. (Blue Button is another good one). Their API allows you can ask interesting questions about adverse drug reaction rates. For example, how many women reported an adverse reaction to statins in California in 2014? You don't even need an API key if you are doing <1000 requests a day. Apparently, openFDA will also cover "Drugs, Devices and Foods" soon.
Large Genomics Projects
There are a bunch of big government-sponsored genomics projects underway. Some of these projects, like Genomics England, will likely open their data up to commercial partners over the next couple of years.
