I recently listed the paper questionnaires etc that we have in our offices from past social care research projects, and tried to establish how long they should be retained for. I also started to look at the electronic data. I thought it might be helpful if I summarised my findings and the conclusions that I reached from a practical "on the ground" viewpoint.
Findings
· details about arrangements for the future retention or storage of research data from each project were hard to locate as they could be found in a variety of sources. They were most likely to be recorded on ethical approval forms.
· generally the arrangements were rather vague but sometimes 7 or 10 years was specified
· there are no specific guidelines for social care. The guidelines that do exist are: Medical Research Council (2000). Good research practice, Department of Health (2007). Research involving the NHS: retention of records, Department of Health (2005). Research governance framework for health and social care, 2nd ed. and Van den Eynden, V., Corti, L., Woollard, M., Bishop, L. and Horton, L. (2011). Managing and sharing data: Best practice for researchers.
· the consensus seemed to be 10 years for retention, in line with the Medical Research Council's guidelines, while the UK Data Archive focus is on permanent retention, with advice on preparing and tidying data and gaining the necessary consents to allow it to be deposited and archived
- Research data is exempt from some obligations of the Data Protection Act. The Act permits the use of personal data for “research purposes” provided that “the data is not processed in such a way that substantial damage or substantial distress is, or is likely to be caused to any data subject” and “the results of the research or any resulting statistics are not made available in a form which identifies data subjects” (Data Protection Act 1998, s 33). The same section of the Act exempts personal data collected for research from the rights of access set out in s 7 and allows it to be processed for purposes other than for which it was originally obtained. More importantly, for the focus of this project, s 33 also states that “personal data which are processed only for research purposes in compliance with the relevant conditions may, notwithstanding the fifth data protection principle, be kept indefinitely”.
- researchers that I spoke to were focused on the requirements of the Data Protection Act and on security and confidentiality as stressed in the ethical approval process. Their perception was that the messages put forward by the UK Data Archive about data sharing and preserving were incompatible with their ethical obligations.
- an initial look at electronic data for projects confirmed my suspicion that tidying, sorting or managing electronic data from projects can really only be done by those immediately involved in that project because of problems with: permissions and access to files; working out which is the definitive version; the need for accompanying documentation to help interpret the data; and the need for knowledge of the software and methods used
· in reality this is not going to happen for past projects as research staff simply do not have the time
Conclusions
· Principal Investigators need to try and be more explicit about retention periods and archiving at the start of the project. It would be helpful if research ethics & governance committees encouraged this
· the only way I can see us being able to manage our research data and make it fit for archive deposit, is if arrangement and plans for this are made at the outset of a project.
· in an ideal world time would be allocated for tidying and preparing data for deposit and this would be written into the proposal.
· the UK Data Archive have a tool that can be used for costing the additional expenses needed to make research data shareable beyond the initial research team
· This type of forward planning will make it easier to reconcile the call for preservation and future access, with ethical considerations of security and confidentiality.
· I suspect that the ability to make research data available may eventually become a condition laid down by sponsors and funders as well as journal publishers, as it is already in the science community. Authors for The Lancet are advised that they may be asked to provide the raw data for research papers up to 10 years after publication and the Economic and Social Research Council already require researchers to offer data generated from their grants to the UK Data Archive.
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