Working with the UK Data Service to support researchers with managing and sharing research data from human participants

Following the introduction of GDPR last May the Research Services team have been getting more and more enquiries about how to handle sensitive data, so we invited  Dr Scott Summers from the UK Data Service (UKDS) to visit us and deliver a one-day workshop on ‘Managing and sharing research data from human participants’. My colleague, Chris Gibson, worked with Scott to develop and arrange the session. It was a thoroughly engaging and informative day, with lots of opportunity for discussion.

The workshop attracted a group of 30 to come along and learn more about best practice for managing personal data. We invited colleagues from across all faculties and ensured that there was a mix of established and early career researchers, postgraduate researchers and professional services staff that support research data management. As well as getting advice to help with data management, the aim was to gather feedback from attendees to help us to shape sessions that can be delivered as part of the Library’s My Research Essentials programme by staff from across the University including Research Services, Information Governance and Research IT.  

As a fairly new addition to the Research Services team, I was keen to attend this workshop. The management of research data from human participants is a complex issue so any opportunity to work with the experts in this field is very valuable. My job involves working with data management plans for projects which often include personal data so gaining a deeper understanding of the issues involved will help me to provide more detailed advice and guidance.

The workshop began with looking at the ethical and legal context around gathering data. This is something that has been brought sharply into focus with the introduction of GDPR. We use ‘public task’ as our lawful basis for processing data but it was interesting to hear that ‘consent’ may be more prevalent as the preferred grounds in some EU countries. Using public task as a basis provides our participants with reassurance that the research is being undertaken in the public interest and means researchers are not bound by the requirement to refresh consent.

The session on informed consent led to lively discussion about how to be clear and specific about how and what data will be used when research may change throughout a project. One solution for longitudinal studies may be process consent – including multiple points of consent in the study design to reflect potential changing attitudes of participants. Staged consent is an option for those wanting to share data but give participants options. The main point that arose from this session is that we should aim to give participants as much control over their data as possible without making the research project so complicated as to be unworkable.

The final session generated debate around whether we can ever truly anonymise personal data. We worked through exercises in anonymising data. It quickly became apparent that when dealing with information relating to people, there are many aspects that could be identifying and in combination even seemingly generic descriptors can quickly narrow down to a small subset of participants. For example, ‘Research Officer’ is a term that could apply to a large group of people but mention this in relation to ‘University of Manchester Library’ and it quickly reduces to a subset of 3 people! The general consensus was that referring to data as ‘de-identified’ or ‘de-personalised’ would be more accurate but that these descriptions may not be as reassuring to the participants so it is imperative that consent forms are clear and unambiguous about how data will be used.

At the end of the session it was great to hear lots of positive feedback from researchers across many disciplines that the workshop took what could be quite a dry topic and made it engaging with numerous opportunities for discussion.

Our second workshop with Scott Summers is due to take place on 26^th February and we are looking forward to gaining more feedback and insights into how we can enhance the support we deliver to researchers who are managing research data from human participants – so, watch this space!