We work with major data providers Across the UK (such as Department of Health, Department for Education and NHS Digital) to develop and optimise ways to appropriately access and manage routine data to link to our trial data sets.
We have experience accessing data from England, Wales and Scotland for health, education and social care data. We also work directly with hospitals and health boards to extract patient records.
What is routine data?
Routine data are collected by hospitals, schools, police, government departments (and many more places) for the purposes of registration, transaction and record keeping to enable the delivery of that service.
For example, patient records are created to enable the clinician to record diagnoses, prescriptions, referrals and tests requested.
By pooling together this pre-existing available information (without all the extensive costs of having to gather that independently), there are valuable opportunities for researchers to notice patterns of outcomes, query data and reach conclusions about a wide range of health options.
We use routine data to help us decide how best to run large trials. Sometimes we don’t know how many people we can recruit to a trial or how best to identify them in the community.
Using routine data for study outcomes
We have a large number of studies on our portfolio where we are accessing routine data on a population to look out outcomes that have been recorded routinely as part of health, education or social care services.
Linking to routine data in our trials
Sometimes the outcome of interest needs more detail than what is recorded routinely. Many of our trials link to some routine data, for example many of our cancer trials access mortality data from NHS Digital, Office for National Statistics, Public Health Wales and the equivalent in Scotland.
Cardiff University's evaluation of the Family Nurse Partnership (FNP) specialist home visiting programme has been summarised in a methods paper published by the Scottish Government. This document describes the detailed methodological approach taken by the study team which is based on a natural experiment.
The study uses solely administrative data from a range of public sector sources. A parallel protocol has also been accepted for publication in a scientific journal.
- Lugg-Widger, FV, Angel, L, Cannings-John, R, Hood, K, Hughes, K, Moody, G and Robling, M. 2018. Challenges in accessing routinely collected data from multiple providers in the UK for primary studies: Managing the morass. International Journal of Population Data Science, 3(3) or watch our webinar on this paper.
- Lugg-Widger, F, Cannings-John, R, Angel, L, Moody, G, Segrott, J, Kenkre, J and Robling, M. 2018. Assessing the impact of specialist home visiting upon maltreatment in England: a feasibility study of data linkage from a public health trial to routine health and social care data. Pilot and feasibility studies, 4(1), p.98.
- Aitken, M et al. 2019. Consensus Statement on Public Involvement and Engagement with Data Intensive Health Research. International Journal of Population Data Science, 4(1).
- Robling, M., Bekkers, M.J., Bell, K., Butler, C.C., Cannings-John, R., Channon, S., Martin, B.C., Gregory, J.W., Hood, K., Kemp, A. and Kenkre, J., 2016. Effectiveness of a nurse-led intensive home-visitation programme for first-time teenage mothers (Building Blocks): a pragmatic randomised controlled trial. The Lancet, 387(10014), pp.146-155.
- Read our response to the Science & Technology Commons Select Committee Digital Government inquiry (Published 10th Oct 2018):