The social licence for research: why care.data ran into trouble

Area of Science:

• Health policy
• Sociology of health
• Bioethics

Background:

• The care.data initiative aimed to extract data from primary care medical records in England for commissioning and research purposes.
• Public concern arose regarding the initiative, suggesting a disconnect between formal regulation and societal expectations.
• Previous research indicates public cooperation in health studies relies on perceived voluntariness, reciprocity, non-exploitation, and public good.

Purpose of the Study:

• To explain public concern regarding the care.data initiative using the concept of a social licence.
• To analyze the factors contributing to the failure of care.data to obtain a social licence.
• To underscore the importance of social legitimacy beyond formal legal authority in health policy.

Main Methods:

• Drawing on the concept of a social licence to analyze the care.data case.
• Examining public perceptions and societal expectations related to health data extraction.
• Identifying specific defects in the care.data initiative that undermined its social licence.

Main Results:

• Care.data failed to secure an adequate social licence due to defects in trust warrants.
• The initiative caused uncertainty regarding the traditional role and duties of general practitioners.
• Ambiguity surrounding care.data's status as a public good contributed to its contestation.

Conclusions:

• The concept of a social licence provides a valuable framework for understanding public resistance to health data initiatives.
• Policy-makers must recognize that legal authorization does not automatically translate to social legitimacy.
• Securing public trust and addressing societal expectations are crucial for the successful implementation of health data projects.