Data Management Plan for a rapid response sub-study of an existing cohort. The Irish Longitudinal Study on Ageing (TILDA) COVID-19 sub-study

Abstract

A Data Management Plan (DMP) is a formal document that outlines the management and stewardship of data generated over the lifecycle of a research project from data collection, and governance structures, to the long-term preservation of data outputs. DMPs are an important feature of good research practice. Our aim is to provide details of the development of a DMP that others can learn from and adapt to their specific needs. Our DMP was developed as part of a COVID-19 sub-study of The Irish Longitudinal Study on Ageing (TILDA), titled “Altered lives in a time of crisis: preparing for recovery from the impact of the COVID-19 pandemic on the lives of older adults”. TILDA is a longitudinal study of community-dwelling older adults. In 2009/2010, an initial nationally representative sample of 8,500 adults aged 50 years and older were selected. The sample for the COVID-19 study were recruited from this existing sample. The objective of the sub-study was to document the lives and experiences of older adults during the COVID-19 pandemic to better understand the effect of the pandemic and public health responses on their well-being. This DMP describes the study design and objectives; data collection tools and procedures; data preparation; data storage and security; data sharing and preservation; and ethical and legal considerations within the European Union and Irish Health Research legislative context. Responsible data governance in Ireland is complex, requiring adherence to both European and Irish legislation. Implementation of the Health Information Bill (2023) may bring further complexities to this context. It is therefore crucial that researchers, data stewards, and other practitioners, share their expertise freely, as we have done here, so that others can learn from their experiences and the health research community can develop standards of best practice.