Ulster University researchers at the Administrative Data Research Centre Northern Ireland (ADRC-NI) are set to present significant findings on the public’s attitudes toward health data sharing at a Knowledge Exchange Seminar Series (KESS) on January 31, 2018.
Over 1200 local people responded to the 2015 Northern Ireland Life and Times Survey (NILT survey) which recorded broad attitudes to data sharing.
The majority of those surveyed, 83 per cent in total, felt that the “right to privacy has to be respected over everything else.” However a further 85 per cent also felt “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.”
The ADRC-NI is a partnership between Ulster University and Queen’s University Belfast, which is supported by the Northern Ireland Statistics and Research Authority (NISRA). The study is based at the Bamford Centre for Mental Health and Institute for Nursing and Health Research within Ulster University.
The ‘Using administrative data to inform policy’ event, which takes place at Stormont, will reveal and debate the findings ahead of the implementation of the General Data Protection Regulation (GDPR) on 25th May 2018.
Gillian Robinson, Professor of Social Research, said: “This is an important time for data protection discussions and our research provides a baseline of public attitudes to data sharing that can and should be reassessed regularly.
“Public support and tolerance for government sharing of personal data can be situation-dependent. Respondents reported a high level of support for data protection measures including checks on researchers (95 per cent), de-identification of data, that is to say, making it anonymous (94 per cent) and that research must have a clear public benefit (93 per cent).”
Helen Dolk, Professor of Epidemiology & Health Services Research, said, “Effective sharing and linking of health and other social data is potentially a game-changer for research leading to advances in health and social wellbeing. The survey results indicate three pillars—trust in organisations, data protection measures, and public benefit—support public confidence in data sharing for research purposes.”
For more information on this research, the NILT survey, and the ways Ulster University and Queens University support research in the public interest, please contact the ADRC-NI Public Engagement and Communications Officer (maternity cover through July 2018) at k.karnell@ulster.ac.uk
Knowledge Exchange Seminar Series (KESS)| Northern Ireland Life and Time Survey (short update)