Transforming care … transforming research?

What if at the touch of a button health professionals could access primary, secondary and social care records (and eventually education records)? This was the topic of the Connected Health Cities and the Great North Care Record event on 4th November in Newcastle.

The Great North Care Record (GNCR) is a new system to enable health professionals to view patients’ health records electronically.

From a patient safety perspective and NHS cost savings point of view, an integrated data system would have huge benefits. There were interesting debates at the event, such as whether there should be filters on particularly sensitive patient data, for example, a history of sexual abuse or mental health problems and the need for assurances around professional conduct and who should be able to access records. The case of Richard Hammond (Top Gear presenter) was mentioned, when in the 24 hours following his accident 300 medical staff accessed his records rather than the expected 20 that needed to.

What was exciting from a Research Design Service (RDS) Advisor perspective was the discussion around the use of the GNCR for research.  In our experience, RDS clients often need information on the prevalence of a certain disease locally: in primary care, collecting this data this can be costly and resource intensive.  This activity then is factored into the project and invariably makes it more expensive and the application less competitive. Having an integrated data system would enable this information to be collected in primary and secondary care to ensure all legitimate cases are captured would speed up the process and hopefully make it less costly.

It would save a huge amount of time and effort in feasibility work when identifying which hospitals/practices to approach as potential recruitment sites.  Rather than have a number (which is invariably an overestimation) from a clinician at site, a search could be conducted to identify the exact numbers of eligible patients in the region.

The icing on the cake – and something I personally have wished for, for many years – would be the inclusion of a research ‘registry’ of patients willing to be approached about research.  With an integrated system, this could be revisited periodically to check if they are still happy to be on/off the registry.  This would provide a ready pool of patients to approach about participation in a study/trial. Patient/public engagement is the next stage in moving forward with the GNCR.  I sincerely hope the exploration of patient/public views on research will extend to the idea of a registry.

 

Photo by  Sarah Deane Photography

 

This is a guest post by Jan Lecouturier, Deputy Director, NIHR Research Design Service North East

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