Finding the key to Unlocking Data

Published 16th of November 2021

By Kristina Cimova on behalf of Unlocking Data team.

Linking data from different sources has an immense value - it can aid our understanding of society, its needs, wellbeing, and existing inequalities. However, it also comes with several challenges. After all, the health of individuals and populations is determined by a complex interplay of interconnected factors. Unlocking Data is a research project funded by the National Institute of Health Research (NIHR) to address these themes by bringing together people from policy and practice across Scotland to think creatively about how we can better use secondary data to improve health and wellbeing. Secondary data refers to data which was originally collected for a purpose other than research but which may nonetheless be useful to this end – one example is the administrative data routinely collected by public services such as schools and the NHS as part of day-to-day service delivery.

The aim of our project is to pinpoint the barriers and facilitators in using these secondary data as a source of evidence for decision-making and, ultimately, to make recommendations for those funding, conducting, and using such research, as well as organisations acting as data controllers. In particular, we want to understand how sharing and linking these data across different sectors of society can be used to best effect as part of Scotland’s efforts to take a ‘whole-systems’ approach to public health

To this end, we have set out to conduct three activity-packed workshops with our participants, including representatives from the government, local authorities, the NHS, and the third sector- from both policy and analytical backgrounds. These workshops are informed by a scoping review of literature conducted by our team into the use of evidence – and in particular, secondary data - for decision-making. This allows us to juxtapose the unique experience of our participants with the existing scholarship on the topic. 

We always knew that the Unlocking Data project would be a short one and that it would require a lot of organisation and preparation for us to complete it on time and with meaningful results and outputs. However, I do not think that anything could have prepared us for the high levels of energy and enthusiasm that workshop attendees brought to the project. 

The preparations for the workshops included countless hours of brainstorming the right activities, learning how to navigate the scribing challenges of the Kumu software with all its nifty and colourful features, but also making sure all the facilitators were on the same page. We were also acutely aware that how these workshops were faciliated could either make or break the quality of information obtained. To ensure a positive outcome, we budgeted for a portion of the funding to a specific facilitation training, which was very helpful and delivered to the facilitation team by the Kinharvie Institute

Admittedly, we have had to battle some challenges that I believe mostly arose from the times that we live in right now- be it trying to figure out smooth transitions from Microsoft Teams breakout rooms, or emphasising several times NOT to press the ‘Leave’ button on the breakout room, all the way to the notorious scheduling difficulties arising from additional COVID-19 workloads and impacts on staff capacity. However, having said that, I think I speak for all the team when I say that we have had exceptional input from our participants. 

In the first workshop, we addressed the big picture by considering the use of evidence for decision-making. To this end we worked with our participants to visually represent (using Kumu software) their . To aid the discussion, we had prepared briefing packs for the participants and facilitators alike, with the valued input from our advisory group. The conceptualisation of using secondary data for decision-making by our participants emphasised the relational dimension of working with data, requiring cooperation between organisations and individuals, but also the influence of political pressures, organisational legacies, and the constraints of existing policy. Crucially, the idea of time was raised from several perspectives. These included the concepts of having sufficient time to process data and make decisions, having time to reflect, time to ask better questions, time to learn more about the technologies and processes of data governance, and timeliness of data usage as well. We also discovered from the literature scoping review and the practical experience of our participants that there are very diverse understandings of what constitutes evidence, impacted by professional roles and disciplines and by the multiple sources used to extract evidence.

In the second workshop, we worked with participants to relate these concepts to three case studies of existing cross-sectoral data linkage projects. This allowed the participants to get their teeth into some practicalities of data usage and linkage. Such practicalities included the challenges of tackling data governance processes, navigating permissions for - and access to -data, and emphasising the importance of standardised processes for data analysis. Again, we were struck by the quality of information put across by the participants. They identified the bottlenecks in the usage of data as closely intertwined with organisational cultures and attitudes, and the conflicting priorities that come as part and parcel of stakeholder agendas, requiring careful balancing for achieving meaningful results. The frequent misunderstanding of policies such as GDPR came through strongly from our participants’ experience, underlining the need for those who work with data to have the correct information on existing policy. We were thrilled to see that the second workshop was already organically developing into recommendations to counter these challenges outlined.

As for those recommendations, we shall tackle them in our third and final workshop, with the help of our invaluable co-investigators, facilitators and case study leads, and with the unwavering support of our brilliant admin support - Lorna Dick. None of this would be seeing the light of day without her input. Now to work on the final Unlocking Data Workshop in November - watch this space for our next blog that will update on our progress.

First published: 16 November 2021