Data-based research in UK palliative care: guidance, challenges, opportunities

Area of Science:

• Healthcare Data Science
• Palliative Care Research
• Bioethics

Background:

• Routinely collected healthcare data holds transformative potential for healthcare improvement.
• Studies like Born in Bradford and UK's COVID-19 response demonstrate the value of routine data research.
• Palliative care can benefit from routine data research to enhance understanding, optimize service use, and reduce inequalities.

Purpose of the Study:

• To highlight the potential of routine healthcare data in palliative care research.
• To emphasize the importance of understanding legal and ethical obligations in this field.
• To encourage contributions to the development of future research structures for routine data.

Main Methods:

• This study is a conceptual review and ethical analysis.
• It examines the legal and ethical frameworks underpinning routine data research.
• Focuses on UK General Data Protection Regulation (GDPR) and Common Law Duty of Confidentiality.

Main Results:

• Routine data research can improve palliative care provision and reduce health inequalities.
• Minimizing participant burden is a key consideration in this research.
• Legal and ethical obligations are considerable but manageable with proper understanding.

Conclusions:

• Routine healthcare data research is a valuable tool for advancing palliative care.
• Adherence to legal frameworks like GDPR and ethical principles is paramount.
• Further development of research structures is needed to maximize the benefits of routine data.