How can trusted research environments support researchers outside of academia? Public engagement, governance and training to support safe use of data
DataLoch, as per other trusted research environments (TREs), needs to facilitate research and innovation from a wider pool of people to allow data to make a step change in health frontline services. There is a recognition that researchers from outside the narrow group of academic/clinical researchers doing descriptive statistics models can drive real change within the healthcare system, by harnessing data for good.
However, it is generally assumed that there is a healthy scepticism from both the public and data controllers over the trustworthiness and feasibility of commercial researchers using sensitive personal data. This goes alongside a general fear of the unknown risks in relation to advanced technologies such as artificial intelligence.
To understand the reality of these perceptions and find out whether and how a wider pool of researchers could demonstrate the required trustworthiness, DataLoch and eDRIS collaborated on a joint exploration. Our goal was to focus on developing our current governance frameworks, based on public engagement, and (from researcher feedback) create a training module to support new types of researchers who might be unfamiliar with TREs, sensitive data, and their responsibilities.
We learned a lot along the way!
The core challenges
Quality public engagement and training development takes time. Engaging a representative sample of the population on something as nuanced as safe research in TREs, and providing useful outputs is challenging to put it mildly. We appointed Ipsos Scotland – a leading social research organisation – to support our objectives to deliver a survey and deeper discussion workshops with local residents in the South-East Scotland region.
Due to the time pressures, we had to work in an agile, iterative way: we designed initial governance and training principles based on our experience, tested them with TRE experts and included these within the public consultation – amending them based on the responses.
Ideally, we would’ve been able to test the complete governance solution and training module on an actual project and received user feedback on the process content and feasibility of the controls we had put in place. However, time did not allow for this and so we are actively seeking inputs from users in the current phase of release.
b) The unknown
Although there are several approved TRE training courses out there for health data – the most commonly used in Scotland being the modules from the Medical Research Council – there wasn’t much agreement during our discussions on what else researchers from different organisational backgrounds might need. Universities such as the University of Edinburgh have entire postgraduate courses on using health data for research – but we needed short, specific, relevant information that researchers would remember and use immediately.
The flexibility provided by DARE UK meant we could adapt what we were doing based on how the project was going and achieving its goals – but not quite knowing what outputs were expected made designing them difficult at the outset.
So, what did we develop?
The survey element of our public consultation showed there is a stark difference in perceptions of trust in commercial entities accessing data in comparison with universities and the NHS. However, over half of respondents still supported the use of data by all the organisation categories presented.
Figure 1: Responses to the question: Would you support or oppose each of the following types of organisations using health data about you for research and development purposes? Base: 595 Ipsos Knowledge Panel respondents aged 16+, living in South East Scotland.
From this insight, combined with the discussion workshops and consultation with TRE and health data experts, we developed recommendations for TREs looking to support data access beyond traditional academic researchers. Helpfully (we think), these are built around the well-known Five Safes model and can be easily adapted from governance structures already in place in TREs: additions to application forms, DPIAs, agreements with data providers and researchers, and some infrastructure requirements.
Following these recommendations will help researchers, organisations and TREs demonstrate the trustworthiness the public expect (and demand) when using sensitive health data – or indeed any data that needs protection. Ultimately, we hope these recommendations and training will help DARE UK’s mission to establish the next generation of TREs for researchers and innovators to securely and efficiently harness the full power of linked datasets, modern digital platforms, tools, techniques and skills.
We’ve got ideas on more public engagement we’d like to do to support how best to develop the services we offer – exploring whether there is an acceptable balance of potential public value and profit-making; investigating perspectives around the role of artificial intelligence in health care research; and examining the track records of the individual researcher and their host organisation – which is more important and in what ways?
Finally, we’ve got a learning platform ready to launch. A self-directed training resource for researchers from outside academia and the NHS to prepare them for the complex world of using sensitive data within TREs. We would like to build a community of learners and the TRE learning hub will upskill researchers and innovators and help engage with users to understand their training needs. At this early stage of delivery, we would welcome user testing and feedback. Please get involved and help us support those new to this area of work.
Would we do it again?
Absolutely: gaining additional resource to support our plans is crucial and it’s amazing to deliver some meaningful public engagement, securing genuine insights to inform the innovative decisions we’ve had to make.
Would you like to find out more?
Discover summaries of our survey and workshops – including the reports produced by Ipsos – through our news items:
- Explore the full survey results on public perspectives of access to health data
- View the findings of deliberative workshops with local residents to support the development of the DataLoch service
- Find out more about this Sprint Exemplar Project and access our full and summary reports on recommendations for governance structures and training development
- Visit our training hub