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

Julie A TaylorSonya CroweFerran Espuny PujolRodney C FranklinRichard G FeltbowerLee J NormanJames C DoidgeDoug William GouldChristina Pagel
Published in: BMJ open (2021)
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.
Keyphrases
  • electronic health record
  • healthcare
  • big data
  • public health
  • gene expression
  • dna methylation
  • genome wide