Aotearoa New Zealand Public Perceptions of the Use of Personal Health Information
Introduction
The Ministry of Health (the Ministry) understands that the health data we hold belongs to New Zealanders. We have a responsibility to provide effective and appropriate stewardship or kaitiakitanga over this data.
In late 2021, the Ministry commissioned a survey of the Aotearoa New Zealand public to understand their views about how their health data should be used. The insights from this work will help ensure we use health data appropriately as we enhance evidence-based decision-making across the health and disability sector.
A total of 2,572 previous respondents to the New Zealand Health Survey participated in the online survey. CBG Health Research collected the data from respondents. The National Institute for Health Innovation (NIHI) at University of Auckland designed the questionnaire and completed the analysis. The survey was based on a similar survey of Waitematā District Health Board (DHB) patients in 2020 developed by a team from NIHI and the Institute for Innovation and Improvement at Waitematā DHB.
The survey findings are presented in this report:
Summary of findings
The survey focused on the respondent’s ‘comfort’ across seven different re-use scenarios. Scenarios ranged from the re-use of health data to inform a person’s own immediate care, through to the re-use of data to understand population-level health patterns.
Data re-use for health purposes
The results showed broad support for data re-use for health purposes, with over 70 percent of respondents being comfortable with their health information being used across the scenarios presented (ranging between 71-79 percent). Between 14-18 percent of respondents reported being neutral, and 7-11 percent were uncomfortable with their health information being used across the scenarios presented.
While there was some slight variation by ethnicity in the level of support for data re-use, a significant majority of Māori and Pasifika respondents were comfortable with each use case.
Feedback from respondents
Survey respondents were given an opportunity to comment directly about each re-use scenario through free text responses. These responses made it clear that support for the re-use of health data comes with conditions.
The most common feedback that people gave us was that:
- the use of their data must be for the greater good and to benefit others
- data must be stored securely to prevent breaches
- privacy must be prioritised, and a person’s data should be shared only on an anonymised basis unless it relates to their immediate care
- data must not be shared outside the health system or used for commercial gain
- there needs to be communication and transparency around the use of data
- the information must be up-to-date and correct.
Conclusion
The social licence survey results provide clear evidence that a significant majority of New Zealanders are comfortable with the re-use of their anonymous health information to enhance evidence-based decision-making by the health and disability sector. This is on the condition that all data is managed appropriately and the conditions above are met.
The Ministry acknowledges that the social licence is a dynamic concept, likely to change based on societal changes and key events. We intend to reassess social licence for the re-use of health data before the end of 2023.