Exploring Comparative Effectiveness and Efficiency in Long-term Care (EXCELC) project is a collaboration between researchers at the University of Kent (UK), the National Institute for Health and Welfare (Finland), the London School of Economics and Political Science (UK) and WU Vienna University of Economics and Business (Austria).
EXCELC project uses personally-identifiable information to conduct research to improve health, care and services. We have to ensure that it is in the public interest when we use personally-identifiable information from people who have agreed to take part in research. This means that when you agree to take part in a research study, we will use your data in the ways needed to conduct and analyse the research study. Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from the study, we will keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum personally-identifiable information possible.
Health and care research should serve the public interest, which means that we have to demonstrate that our research serves the interests of society as a whole. We do this by following the UK Policy Framework for Health and Social Care Research.
If you wish to raise a complaint on how we have handled your personal data, you can contact the Data Protection Officer at the University of Kent(PDODataProtection@kent.ac.uk; or in writing to The Data Protection Officer, Room P1.03 Darwin College, University of Kent, Canterbury CT2 7NY) who will investigate the matter. If you are not satisfied with our response or believe we are processing your personal data in a way that is not lawful you can complain to the Information Commissioner’s Office (ICO).
Suggested wording: Health Research Authority – https://www.hra.nhs.uk/planning-and-improving-research/policies-standards-legislation/data-protection-and-information-governance/gdpr-guidance/templates/transparency-wording-public-sector/