Things that participants agreed and disagreed about

Word cloud of minority views. Text reads: governance, inform, understandable language, results, valuable, storing voluntary safety, intent, subpopulations, third party

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 1Appendix E), while others were seen as essential by just one or two participants (see Figure 2Appendix E).