Article Text
Abstract
Background We 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.
Objective We 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.
Findings The 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.
Conclusions The 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.
- health informatics
- information management
- epidemiology
- quality in health care
- public health
- audit
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Footnotes
Twitter @chrischirp
Contributors CP, SC and JAT were involved in conceptualisation, design and writing of the manuscript, JAT wrote the first draft. CP, SC, JAT, FEP, RCF, RGF, LJN, JD and DWG were involved in the review of the manuscript.
Funding This study is supported by the Health Foundation, an independent charity committed to bringing about better health and healthcare for people in the UK (Award number 685009).
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.