CENTRIC

Co-produced and stakeholder informed training for UK researchers working with routinely collected data.

Preparing for administrative data research

Background

Information about individuals is routinely collected in the course of providing public services such as health and social care. This information provides a record of the care or support received and can also be invaluable to government departments and academic researchers.

Analysing such routine data can help answer important questions, for example, about the efficient provision of services, improvements in care, and the impact of policies on patient outcomes. Importantly, the use of this information is carefully controlled by government departments to ensure that legal requirements are adhered to when sharing with researchers.

However, the public may be largely unaware of what information is collected on them, how it may then be shared for research and the safeguards that are already in place. The practice of collecting and sharing routine data may then be undertaken without a good understanding of public expectations. This can erode public confidence and damage the prospect of greater use of routine data for the public benefit.

Similarly, researchers who access routine data also need to be adequately informed about applicable regulations and requirements. Developments in the law such as the General Data Protection Regulations (GDPR) and multiple government departments sharing data means that researchers need to keep pace with the requirements for good practice.

Stakeholder involvement

The importance of the public

Therefore, we will develop a training programme for researchers working with a wide range of UK public sector routine data. To develop the training we will talk to three stakeholder groups.

First, we will survey researchers who currently use routine data and also those who may do so in the future. We will explore their training needs, their current experiences of training in this area and their preferences for learning (eg in a workshop, online).

Second, we will run discussion groups with professionals based in UK data providers. We will ask them about their experiences of providing support to researchers and also what they consider to be key issues to cover in new training.

Third, we will run a series of workshops with members of the public to explore their understanding of and preferences for research that uses routine data. As this topic may be initially unfamiliar to participants. we will use an approach called deliberative enquiry, which ensures that important information is made available to participants so that they then may have an informed discussion.

Developing training and dissemination strategy

Throughout this process, we will assess the benefits that the training will generate and make decisions about what to include or exclude based on which benefits are most important and which are most likely to occur.

The training plan will then be discussed and agreed with key stakeholders (for example, those involved in the development work). We will develop the training as a face-to-face workshop and an online training module. We will train two groups of researchers, evaluate their experiences and make changes if necessary. We will write a study report, put information on our own website and promote the training with our study stakeholders and our existing networks of researchers and the public.