The road to hell is paved with good intentions: the experience of applying for national data for linkage and suggestions for improvement

BackgroundWe can improve healthcare services by better understanding current provision. One way to understand this is by linking data sets from clinical and national audits, national registries and other National Health Service (NHS) encounter data. However, getting to the point of having linked nat...

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Veröffentlicht in:BMJ open Jg. 11; H. 8; S. e047575
Hauptverfasser: Taylor, Julie A, Crowe, Sonya, Espuny Pujol, Ferran, Franklin, Rodney C, Feltbower, Richard G, Norman, Lee J, Doidge, James, Gould, Doug William, Pagel, Christina
Format: Journal Article
Sprache:Englisch
Veröffentlicht: London British Medical Journal Publishing Group 19.08.2021
BMJ Publishing Group LTD
BMJ Publishing Group
Schriftenreihe:Communication
Schlagworte:
audit
Audits
Cardiovascular disease
Clinical trials
Confidentiality
Congenital diseases
Datasets
epidemiology
Ethics
health informatics
Health services
Health Services Research
Heart
information management
Intensive care
Medical research
Patients
Pediatrics
Process planning
public health
Quality improvement
quality in health care
Research centers
United Kingdom > UK
ISSN:2044-6055, 2044-6055
Online-Zugang:Volltext
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Zusammenfassung:BackgroundWe can improve healthcare services by better understanding current provision. One way to understand this is by linking data sets from clinical and national audits, national registries and other National Health Service (NHS) encounter data. However, getting to the point of having linked national data sets is challenging.ObjectiveWe describe our experience of the data application and linkage process for our study ‘LAUNCHES QI’, and the time, processes and resource requirements involved. To help others planning similar projects, we highlight challenges encountered and advice for applications in the current system as well as suggestions for system improvements.FindingsThe study set up for LAUNCHES QI began in March 2018, and the process through to data acquisition took 2.5 years. Several challenges were encountered, including the amount of information required (often duplicate information in different formats across applications), lack of clarity on processes, resource constraints that limit an audit’s capacity to fulfil requests and the unexpected amount of time required from the study team. It is incredibly difficult to estimate the resources needed ahead of time, and yet necessary to do so as early on as funding applications. Early decisions can have a significant impact during latter stages and be hard to change, yet it is difficult to get specific information at the beginning of the process.ConclusionsThe current system is incredibly complex, arduous and slow, stifling innovation and delaying scientific progress. NHS data can inform and improve health services and we believe there is an ethical responsibility to use it to do so. Streamlining the number of applications required for accessing data for health services research and providing clarity to data controllers could facilitate the maintenance of stringent governance, while accelerating scientific studies and progress, leading to swifter application of findings and improvements in healthcare.
Bibliographie:Communication
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SourceType-Scholarly Journals-1
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ISSN:2044-6055
2044-6055
DOI:10.1136/bmjopen-2020-047575