Co-operative datasets

Tim Skelton, Chief Operating Officer for NIHR Infrastructure

Leicester, like at least 20 other academic and health partnerships, has benefitted from NIHR investment over the past decade and there has been a stream of amazing academic outputs and impacts on patient care and treatment. You only have to read the news sections on any of the Biomedical Research Centre (BRC) or Applied Research Centre (ARC) websites, or indeed the NIHR twitter feed, to see the stellar work going on in.  I for one am incredibly proud to be able to support and facilitate some of this work in Leicester for the benefit of NHS patients.

Enabling comparable datasets

Meticulous planning

The vast majority of the work described above will have been meticulously planned as part of the BRC or ARC application and themes of research activity; again, commendable stuff.  We in Leicester serendipitously had a bunch of researchers from multiple themes in the BRC meeting to discuss something unrelated about 18 months ago and the conversation moved to data, the hot topic of the moment.

How do we standardise this?

Not unsurprisingly Leicester like everyone else is collecting a lot of patient data as part of our research endeavours. However, what we haven’t done so well is collect data in a standardised format using the very best standard measures.  For example, most of our research themes collect anthropometric data, but we have never checked to see if we collect it in the same format and to the same standard of fidelity (we don’t by the way) which means that the data is largely only good for the study it was collected for. This is shame as a lot of time and energy goes into recruiting the patient and collecting the data in the first place. Plus, it’s really time-consuming for our technical team to standardise, and often we aren’t sure exactly what that standard is as it hasn’t been agreed – until now.

Enter the BRC DATA CO-OPERATIVE and our group of researchers who, over the last 12 months, have committed time and effort to agree a standard list of data items which we all collect for every BRC study.  The researchers have also looked to the evidence available from their respective fields to agree the best measurement standards for things like spirometry, acceleromtery or HBA1C (as specific examples). 

A single database

The result is that all the BRC studies will use a standard Case Report Form, with standard data fields and standard measurement tools.  This data (following appropriate ethical approvals and consent) will then be held in a single large database which, via an access committee, will be kept as a BRC legacy for Leicester researchers and added to over time by Leicester researchers for the benefit of Leicester patients and beyond.

Investigator buy-in

If I were to offer some insights from our experience, I would say that the key to making this process a success is ensuring that the investigators have a shared vision of what can be achieved and are collectively clear about ‘what’s in it for them’ so that expectations can be managed.  The infrastructure support behind the vision is equally important as this ensures we can deliver on the aspirations of the investigators.

Without the flexibility of an open source software platform such as RedCap the ambition would be more difficult to realise.  The big highlight in the process was the relative ease with which the investigators got behind an ambitious proposal and were prepared to commit time to agreeing standards; we also have had strong leadership at a professorial level which has ensured that the project has been driven forward.

For more information about the BRC DATA CO-OPERATIVE, contact Tim Skelton, Chief Operating Officer for NIHR Leicester Infrastructure, on tim.skelton@uhl-tr.nhs.uk

Follow the work of the NIHR in Leicester on Twitter @LeicesterBRC