Researchers need access to NHS data for effective redesign of clinical pathways

Gilbert, Ruth and Dutey-Magni, Peter (2017) Researchers need access to NHS data for effective redesign of clinical pathways. BMJ, 358, j3787. (doi:10.1136/bmj.j3787).

Abstract

Sood and colleagues argue for clinical informatics leaders in NHS organisations to accelerate the development of digitally enhanced models of care.1 We think that safe and effective redesign of clinical pathways and better use of health data requires not just digital leadership but also academic involvement.

Researchers are needed to generate and publish robust evidence on the benefits and harms of digitally enhanced service models. Rigorous analyses of healthcare databases require knowledge of frontline services and expertise in data science and statistics, which are best provided by a team with safe and accountable access to data. Without early involvement of researchers in the design of pathways, results can be wrong, and care can be misdirected or harmful. Despite warnings about the potential harms of risk stratification,2 such practice continues, directed by algorithms, untouched by frontline clinicians, and mostly unevaluated by researchers.

Academic researchers are currently held back from contributing to clinical redesign by unreasonable obstacles to data access. NHS England has streamlined data access for local authorities and commissioners,34 but researchers are left behind, jumping through the hoops of data applications, while witnessing shortcomings in the design and evaluation of new services.

Simultaneously, a minority of NHS data releases5 go to commercial companies that perform analytics for multiple clients, including NHS bodies. These users have few incentives or resources to document and publish how data are being used, let alone share their algorithms and build a knowledge base of methods and expertise. The risk is that patients, clinicians, and service providers might not be aware of, let alone be able to explain, how healthcare data are changing care. Without wider and more timely use of health data for research, the social contract with patients—to use health data for public benefit—risks being undermined.

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Contributors

Author: Peter Dutey-Magni

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