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Over the last decade, research has found public support for health data being used for public benefit when concerns related to privacy, commercial motives, equity and fairness are addressed. The term “social licence” describes which uses and users of health data members of the public support – and under what conditions. Social Licence for Uses of Health Data builds upon previous research by adding:

  • experienced public and patient advisors’ views about essential requirements for a use or user of health data to be within social licence​;
  • specific examples of health data uses and users that participants agreed are within or outside of social licence​; and
  • views of individuals who have different needs and expectations than most other people (and therefore might be absent from research findings that focus on majority views)​.
Aurora borealis over Great Slave Lake, Northwest Territories, Canada

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Social Licence for Uses of Health Data - full report

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Social Licence for Uses of Health Data - full report

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Appendix A. Principles and approach

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Appendix B. Process

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Appendix C. Table of requirements for health data social licence

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Appendix D. Examples of requirements in participants’ own words

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Appendix E. Word clouds

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Appendix F. Peer reviewer feedback

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