My sources tell me the output from the joint NCI / NCRI Informatics conference will soon be online - interesting collaborative proposals in the area of using clinical data for research purposes - a sneaked preview:
"PK spoke on the aims of this track within which patient advocates, Information Governance professionals, pharma representatives and healthcare data managers from the US, England, Scotland, Wales and Australia discussed achievements and issues to be overcome in the area of data integration for research. The group realized their intention to develop a concrete collaborative project which would serve to highlight issues and potential solutions in this area.
Dr. JS summarized the theme’s outcomes in the closing plenary session. He addressed the context within which research use of clinical data was undertaken: that the terminology “secondary uses” highlights the fact that data is not considered a multi-purpose core resource in healthcare in the way that it is in other industries; that this makes clear the need to think about health data in a systematic way to the ends of improved public health and better outcomes; and that privacy requirements and patient involvement need to be thought of in different ways to leverage the desire that many patients have to see their data put to use beyond their own immediate care.
He also addressed the technical and procedural requirements to enable data integration and analysis, governance issues (and the key partnership between patients and users), the complexity of the standards landscape and technical architectures. The group ended by discussing use cases and which led to a proposal which will be taken forward by various members of the group: looking at potential links between ******** medication and differential incidence of *********, they will integrate de-identified data from multiple locations [UK (England, Scotland, Wales), Australia, US] and aggregate from disparate technology platforms."