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Patient Perceptions About Data Sharing & Privacy: Insights from ActionADE.

Serena S Small1, David Peddie1, Christine Ackerley1

  • 1School of Communication, Simon Fraser University, Burnaby, BC, Canada.

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Summary
This summary is machine-generated.

Information communication technologies (ICTs) can improve healthcare, but raise privacy concerns. This study addresses this tension by developing a platform for sharing patient data while protecting privacy, offering design recommendations.

Keywords:
Data privacyinformation and communication technologypatient participationsociotechnical

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Area of Science:

  • Health Informatics
  • Medical Privacy
  • Public Health

Background:

  • Information communication technologies (ICTs) offer potential benefits for healthcare delivery, including improved continuity of care and secondary data use for surveillance and research.
  • However, the implementation of ICTs in healthcare also introduces significant privacy concerns regarding patient data.
  • Balancing the benefits of data sharing with the need for privacy protection is a critical challenge in health informatics.

Purpose of the Study:

  • To examine and address the tension between enhancing health delivery through ICTs and protecting patient privacy.
  • To inform the design of a novel platform, ActionADE, for documenting and communicating patient-specific adverse drug event (ADE) information.
  • To develop recommendations for system design that balance the sharing and protection of personal health information.

Main Methods:

  • Qualitative exploration of privacy concerns from the patient's perspective.
  • Development and implementation of the ActionADE platform.
  • Analysis of patient feedback to inform system design.

Main Results:

  • Identified key patient privacy concerns related to the documentation and communication of ADE information.
  • Gathered insights into patient expectations for data sharing and protection within a healthcare platform.
  • Established a foundation for designing the ActionADE platform with patient-centered privacy safeguards.

Conclusions:

  • Patient perspectives are crucial for designing effective and trustworthy health information systems.
  • Recommendations derived from patient input can guide the development of platforms that balance data utility and privacy.
  • The ActionADE platform aims to provide a model for secure and effective communication of patient-specific health information.