ReviewBMJ open2021
The road to hell is paved with good intentions: the experience of applying for national data for linkage and suggestions for improvement.
Review in BMJ open, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 23 papers, 3 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
23 citing papers in PubMed, 3 syntheses or guidelines pooled it, 46 citations in OpenAlex.
- A Hybrid Architecture (CO-CONNECT) to Facilitate Rapid Discovery and Access to Data Across the United Kingdom in Response to the COVID-19 Pandemic: Development Study.Journal of medical Internet research · 2022Pooled it
- Rapid systematic review to identify key barriers to access, linkage, and use of local authority administrative data for population health research, practice, and policy in the United Kingdom.BMC public health · 2022Pooled it
- What makes administrative data "research-ready"? A systematic review and thematic analysis of published literature.International journal of population data science · 2022Pooled it
- Trial
- Embedding the public voice in clinical trials: developing public-informed training for patient data research.Research involvement and engagement · 2026Article
- Traversing the data landscape: insights and recommendations from a case study using novel linkage of care home and health data.BMJ health & care informatics · 2026Article
- The Road to Hell Winds On: The High Administrative Burden of Maintaining Linked National Health Data.International journal of population data science · 2026Article
- A scoping review of routinely collected linked data in research on gambling harm.NPJ digital medicine · 2025Article
- Comparison of outcomes of the 50-year follow-up of a randomized trial assessed by study questionnaire and by data linkage: The CONCUR study.Clinical trials (London, England) · 2025Article
- Time and cost of linking administrative datasets for outcomes assessment in a follow-up study of participants from two randomised trials.BMC medical research methodology · 2025Article
- Piloting a minimum data set for older people living in care homes in England: a developmental study.Age and ageing · 2025Article
- How to establish and sustain a disease registry: insights from a qualitative study of six disease registries in the UK.BMC medical informatics and decision making · 2024Article
- Prehospital early warning scores for adults with suspected sepsis: the PHEWS observational cohort and decision-analytic modelling study.Health technology assessment (Winchester, England) · 2024Observational
- Ethics and legal requirements for data linkage in 14 European countries for children with congenital anomalies.BMJ open · 2023Review
- Leveraging Administrative Data to Better Understand and Address Child Maltreatment: A Scoping Review of Data Linkage Studies.Child maltreatment · 2023Article
- "In conferences, everyone goes 'health data is the future' ": an interview study on challenges in re-using EHR data for research in Clinical Data Warehouses.AMIA ... Annual Symposium proceedings. AMIA Symposium · 2023Article
- Federated learning for generating synthetic data: a scoping review.International journal of population data science · 2023Article
- Lessons learned from using linked administrative data to evaluate the Family Nurse Partnership in England and Scotland.International journal of population data science · 2023Article
- Article
- Establishing risk factors and outcomes for congenital hypothyroidism with gland in situ using population-based data linkage methods: study protocol.BMJ paediatrics open · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
9 authors at 5 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
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.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.