Exploring older people’s attitudes and preferences around the use of their routinely collected healthcare data in brain health research

Abstract

AbstractBackgroundOver 50% of dementia in NZ may be due to high prevalence of risk factors such as hypertension, diabetes and cardiovascular disease. If so, a better understanding of the relationships may present ways to mitigate the risk of dementia. Community‐based epidemiological studies would provide definitive evidence but are resource‐intensive so we need to explore alternative sources of data such as routinely collected health information.The overarching aim of our research is to use a machine learning model to identify population groups at high risk of cognitive decline and/or dementia. But first we need to gauge the appetite of service users to have their personal data used in this way. This study aimed to explore the attitudes and preferences of people aged 55+ living in Counties Manukau regarding the use of their de‐identified health data and understanding their concerns and degree of comfort in different scenarios.MethodAn anonymous online survey was conducted with people aged 55+ from NZ European, Māori, Pacific, Chinese and Indian communities currently engaged with older adult health services in Counties Manukau District in 2022. We offered service users the opportunity to complete the survey by telephone if preferred, and the opportunity to be interviewed in languages other than English to ensure adequate representation of the local population.ResultOver 85% of the participants were aware of how their health information was used for service development and assessing population trends, and about 80% were comfortable or very comfortable with data being used in this way, assuming data were stored securely and confidentiality was assured. Participants generally felt that patients’ permission was required if data were being analysed by people other than health professionals or being used by commercial companies, and that there should be transparency about these uses. There were some specific cultural concerns about patients’ data being used after their death.ConclusionThis study supports the idea that the local population are generally supportive of researchers using their de‐identified routinely collected data for research purposes that will benefit the population from which the data were taken, but specific cultural concerns need to be addressed.