Research data use in a digital society: a deliberative public engagement

Area of Science:

• Health Informatics
• Data Science
• Public Policy

Background:

• Evolving data sources present research opportunities and partnership potential.
• Linking public and private data raises concerns about potential negative consequences for individuals and groups.
• Public consultation is crucial for balancing data linkage opportunities with necessary protections.

Purpose of the Study:

• To gather public input on the use of linked data for research purposes.
• To explore public perspectives on combining data from various sources, including electronic medical records.
• To inform policy development regarding data use authorization and public involvement.

Main Methods:

• A four-day public deliberation event was held in British Columbia, Canada.
• 29 residents engaged in structured discussions on controversial data use issues.
• Participants deliberated on the use of electronic medical records and combined public-private data.

Main Results:

• 17 deliberative conclusions were reached, categorized into four themes.
• Key themes included balancing benefits and harms, data use protections, authorization requirements, and ongoing public involvement.
• The public supports research using linked data, provided robust oversight and controls are in place.

Conclusions:

• Public deliberation provides essential input for policy-making on linked data research.
• Findings highlight the need for policies that incorporate public values and ongoing engagement.
• Recommendations inform legislation and practices for linking public and private data sources.