The project is looking to develop infrastructure supporting research and diagnostic decision support in primary care – and in the UK is working with GPRD (the primary care data-source).
Prof. Delaney referred to the well worth reading report from the US Institute of Medicine of the National Academies DigitalInfrastructure for the Learning Health System: The Foundation for ContinuousImprovement in Health and Health Care - Workshop Series Summary
Prof. Delaney’s big statement was that “Research is in crisis!”, his verdict on the recent reports (we will find the link!) on caBIG was that the lesson to be taken is, “Don’t build massive infrastructure projects! They just grow and grow and create wealth for consultants.” Interestingly, other speakers noted that they were using at least one caBIG tool in the development of their own infrastructures.
Prof. Delaney’s work on TRANSForM encompasses a data quality tool, data linkage functionality (browsing, selection, extraction) and semantic mediation – the latter facilitating the transformation of Electronic Health Records (EHRs) into research quality data (EHRs with tabs for CRFs which partially pre-populate and can ultimately be signed-off online).
This last facility is at the heart of the work, using reference ontologies, controlled vocabularies etc. to interpret the EHRs.
The first year’s deliverables (including the privacy framework, security framework and provenance framework – together creating the governance framework) are already available on the website: http://188.8.131.52/Home.html
We’d be interested to know the relative ease of navigation of the regulatory landscape for each of the involved nations.... and will the deliverables form the semantic mediation be published?
This is the abstract for Prof. Delaney’s talk:
“TRANSFoRm is an EU FP7 project that aims to develop and test a digital infrastructure for the 'learning healthcare system'. Specifically we are working to develop capacity within primary care electronic health records to manage research workflow (recruitment and follow up), data collection and record linkage, and to develop diagnostic decision support using a common infrastructure.