N Z Med J. 2023 Sep 15;136(1582):64-86.
AIMS: Routinely collected health data can provide rich information for research and epidemiological monitoring of different diseases, but using the data presents many challenges. This study aims to explore the attitudes and preferences of people aged 55 and over regarding the use of their de-identified health data, and their concerns and comfort in different scenarios.
METHODS: An anonymous online survey was conducted with people aged 55 and over currently engaged with health services in a New Zealand health district during June-October 2022. The survey could be completed online or by telephone and was available in eight languages.
RESULTS: Seventy-nine percent of respondents knew that their health information was currently being used in the ways described in the scenarios, and between 80-87% felt comfortable or very comfortable with their data being used as described in the scenarios. In contrast, 4% (n=9) felt “uncomfortable” or “very uncomfortable” across all of the scenarios. Participants expressed concerns about data accuracy, privacy and confidentiality, security, transparency of use, consent, feedback and the risk of data being sold to commercial companies. Some participants identified situations where permission should be required to link data, including being used by people other than health professionals, containing sensitive health issues, or being used for commercial purposes.
CONCLUSION: This study finds general support from patients for the use of their routinely collected data for secondary purposes as long as its use will benefit the population from which the data are taken. It also highlights the necessity of including the perspectives of different cultures in the collection, storage, use and analysis of health information, particularly concerning Māori cultural considerations.