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Data-based research in UK palliative care: guidance, challenges, opportunities
Paul Taylor1,2, Katherine Bishop3, Joanna M Davies4
1Sheffield Centre for Health and Related Research, University of Sheffield, Sheffield, UK drpaulmtaylor@gmail.com.
None:
Routinely collected healthcare data has the potential to transform healthcare. Initiatives such as the Born in Bradford study and the UK's COVID-19 response show how routine data research can improve and save lives. Within palliative care, there is scope for such research to improve understanding of care provision, avoid unnecessary service use and reduce inequalities, while minimising burden on research participants.The legal and ethical obligations surrounding such research are considerable, and it is important for those designing, conducting and interpreting routine data research to understand these obligations and to contribute to the development of future research structures. The UK General Data Protection Regulations (GDPR) and Common Law Duty of Confidentiality underpin the legal and ethical frameworks surrounding routine data research.The legal and ethical obligations surrounding such research are considerable, and it is important for those designing, conducting and interpreting routine data research to understand these obligations and contribute to the development of future research structures. The UK General Data Protection Regulations (GDPR) and Common Law Duty of Confidentiality underpin the legal and ethical frameworks surrounding routine data research.
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