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Area of Science:

  • Health Informatics
  • Information Science
  • Sociology of Technology

Background:

  • Distributed Ledger Technologies (DLT), or blockchain, are increasingly explored for health data sharing.
  • A gap exists in understanding public perception of DLT in healthcare data management.
  • Personal health data sharing models are evolving, necessitating public attitude research.

Purpose of the Study:

  • To investigate public views and concerns regarding new personal health data sharing models in the UK.
  • To explore the potential of DLT in enhancing health data sharing.
  • To identify public acceptance factors and barriers for DLT in health data.

Main Methods:

  • Conducted a series of focus groups across the UK.
  • Explored participant opinions on decentralized health data sharing models.
  • Gathered qualitative data on perceived benefits and concerns.

Main Results:

  • Participants generally favored decentralized health data sharing models.
  • Immutable and transparent properties of DLT, offering proof and audit trails, were highly valued.
  • Potential benefits include improved health data literacy and informed patient consent.
  • Concerns were raised about exacerbating health/digital inequalities and removing intermediaries.

Conclusions:

  • Public attitudes in the UK are broadly supportive of DLT for health data sharing, valuing its security and transparency features.
  • Addressing concerns about equity and the role of intermediaries is crucial for successful implementation.
  • Further research is needed to explore patient engagement and trust in DLT-based health data systems.