Things that participants agreed and disagreed about
Through a deliberative process over hours of facilitated discussion and weeks of reflection, all 20 participants agreed that it was WITHIN social licence for health data to be used:
- by healthcare practitioners - to directly improve the healthcare decisions and services provided to a patient
- by governments, healthcare facilities, and health system administrators - to understand and improve health care and the healthcare system
- by university-based researchers - to understand the drivers of disease and wellbeing
There was further consensus that it is NOT within social licence:
- for an individual or organization to sell (or re-sell) someone else’s identified health data
- for health data to be used for a purpose that has no patient, public, or societal benefit
There were many different views about essential requirements for a use or user of health data to be within social licence and dialogue did not lead to consensus. By the end of the process, participants had generated a list of 85 essential requirements, with some participants actively opposed to requirements that others thought were essential (see Appendix C Table). Some requirements were supported by many people (see Figure 1, Appendix E), while others were seen as essential by just one or two participants (see Figure 2, Appendix E).
