Public Attitudes to Data Sharing in Northern Ireland: Findings from the 2015 Northern Ireland Life and Times survey

A module of questions on attitudes to data sharing was included on the 2015 Northern Ireland Life and Times survey (NILT). The NILT 2015 survey included interviews with 1202 respondents sampled via a systematic random sample of addresses taken from the Postcode Address File. The research was funded by the Northern Ireland Health and Social Care Public Health Agency Research and Development Office. High proportions of respondents trust their GP surgery (91%) and NHS (86%) to keep information or data secure and use it appropriately. Slightly smaller proportions trust government departments (73%) and academic researchers (72%) and trust in charities (51%) and commercial organisations (41%) is much lower. Overall, 42% said they had ever had particular concerns about how any of those organisations used the information they kept. The majority of Northern Ireland (NI) residents support the concept of sharing of identified health data in order to improve services. Over 95% were in favour of sharing data within the health service by means of the electronic care record, and over two thirds of people were in favour of health information being shared to improve access to services provided by other government departments, with information about mental health or children seen as more sensitive. Regarding sharing data for research, eighty-five percent of people agree that “if personal data can be made anonymous and a person’s right to privacy maintained, then the data should be used where there is a benefit to society”. Nearly one third of respondents insist that “data should only be shared for research if there is explicit consent, even if this means you will have to abandon the research if there are difficulties contacting people”. It was striking that this attitude toward needing consent is associated with low trust in organisations including the NHS and government departments. However, future research is recommended to investigate the extent to which anonymization of data would address this concern. There is a high level of support for data protection measures, particularly de-identification, checks and penalties for researchers, and making sure research is of public benefit. Other measures also have high support e.g. data access in dedicated secure data centres, and making results public. The lower level of trust in commercial organisations to keep data securely and use it appropriately is reflected in less support for data sharing with commercial organisations and 50% believe the data protection safeguards implemented for academic researchers should be greater for commercial organisations. However, there was evidence that where there is great public benefit, there is more support for commercial access to data. In conclusion, public support for data sharing sits on three pillars – trust in organisations, data protection measures, and public benefit. If any of these are reduced or taken away, public support falls, and conversely if energy is put into one of these domains but not in others, then it will not be enough to secure public support. A repeat survey in three years’ time is recommended to reflect the progress that has been made.