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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
- 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)
Downloadable materials
- Social Licence for Uses of Health Data - full report (594 KB pdf and 576 KB read-only MS Word)
- Appendix A. Principles and approach (82.7KB read-only MS Word)
- Appendix B. Process (85.5KB read-only MS Word)
- Appendix C. Table of requirements for health data social licence (98.3KB read-only MS Word)
- Appendix D. Examples of requirements in participants’ own words (68.7KB read-only MS Word)
- Appendix E. Word clouds (382KB read-only MS Word)
- Appendix F. Peer reviewer feedback (71.4KB read-only MS Word)
NOTE: All materials are available in read-only MS Word format with alt text to increase the accessibility of this report. We welcome suggestions related to this practice! Please email communications@hdrn.ca if you have any feedback.