Taylor, JA;
Crowe, S;
Espuny Pujol, F;
Franklin, RC;
Feltbower, RG;
Norman, LJ;
Doidge, J;
... Pagel, C; + view all
(2021)
The road to hell is paved with good intentions: the experience of applying for national data for linkage and suggestions for improvement.
BMJ Open
, 11
(8)
, Article e047575. 10.1136/bmjopen-2020-047575.
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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.
| Type: | Article |
|---|---|
| Title: | The road to hell is paved with good intentions: the experience of applying for national data for linkage and suggestions for improvement |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1136/bmjopen-2020-047575 |
| Publisher version: | http://dx.doi.org/10.1136/bmjopen-2020-047575 |
| Language: | English |
| Additional information: | This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/. |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > UCL BEAMS UCL > Provost and Vice Provost Offices > UCL BEAMS > Faculty of Maths and Physical Sciences UCL > Provost and Vice Provost Offices > UCL BEAMS > Faculty of Maths and Physical Sciences > Dept of Mathematics UCL > Provost and Vice Provost Offices > UCL BEAMS > Faculty of Maths and Physical Sciences > Dept of Mathematics > Clinical Operational Research Unit |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10133718 |
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