Wales offers rich data pickings with abundance of information resources

Wales Offers Rich Data Pickings with Abundance of Information Resources

From a stable population to rich sets of data across several key databases, Wales is proving itself to be a valuable centre for research. In our recent blog, my colleague Geena Ware and I talked about some of the ways in which population size, data and cutting-edge patient projects have made Wales a great country for life sciences companies to do business in.

Certainly, the fact that the population in Wales doesn’t change much provides researchers with data longevity, and, within that, a good mix of socio-economic classes as well as urban and rural populations. And, as we mentioned before, the fact that the NHS in Wales has its own IT infrastructure allows for data connection between the regions.

One very exciting data-capture project is the SAIL databank, which was launched in 2006 with the first pilot study taking place in 2007, and has the flexibility to bring in new datasets at any point. So, if there is a dataset that the project leaders become aware of that isn’t currently feeding into SAIL, they can pull that new data in to expand the reach. The database is being used for a number of purposes, including as part of the UK wide COVID symptom tracker – a mobile application that people across the country are encouraged to keep up to date. SAIL is a highly collaborative, open database and anyone can apply to source data from it.

Keeping caregivers informed

In March 2021, it was announced that Canisc – a database that allows organisations to record the diagnosis, treatment and follow-up care information for a patient – was being phased out and replaced with a Cancer Informatics System. The reason for the change is the old service didn’t have the flexibility required to support all users and needed to be replaced with a more accessible system that could be accessed by patients with cancer and all their caregivers.

What the Cancer Informatics System does is provide a single patient record of all stages of that person’s cancer pathway, right from diagnosis through to their whole treatment. The system reaches both primary caregivers as well as secondary care, so whoever is interacting with the patient has a full picture of their care journey.

Another useful source of population information is the monthly Welsh GP prescribing data that is fed into a central repository and incorporates information such as medicines that are prescribed in Wales and then dispensed by community pharmacies in Wales or England. While it doesn't include private prescriptions, these represent a small percentage of prescriptions in Wales.

Patient at the centre

A growth area in research today is the impact of medicines on the patient through patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs). A group of experts at Cedar – an NHS-academic evaluation centre that sits within Cardiff and Vale University Local Health Board and Cardiff University – built the database as a way to ensure a consistent method of data collection. Cedar has done a lot of work on different kinds of PROM questionnaires over the years. The database collection and validation was done in collaboration with health boards and trusts across Wales, as well as having clinicians and patients agree on a common point in the health journey at which to collect the data. The point is that if data is collected at the same point, and in the same way, researchers can compare apples with apples.

As the PROMS and PREMS data continues to build, users will have a strong baseline comparator for new treatments and services and ways of managing conditions. And as new treatments emerge, the same comparisons can be made. That feeds into a key focus for Wales, which is value-based healthcare. The point of having rigorous PROMS and PREMS data is it provides a good measure to ensure that the services and the resources are being used appropriately and optimally.

The data also has huge potential value for health technology assessment (HTA) submissions in terms of understanding the cost-effectiveness of a treatment. Combining PROMS and PREMS with other data, such as from clinical trials and cost-effectiveness evaluations, stakeholders have a more complete picture of the cost of treating and delivering interventions and the full benefit to the patient and the healthcare system.

One other new source of population data has been the introduction of Blueteq to Wales. While the NHS in England has used a Blueteq system for some time, there was a lot of reticence about adopting it in Wales because the healthcare system is very different from England’s. The system is not without controversy, with some seeing it as a way to control prescribing higher-cost drugs. For example, in England, if a hospital specialist wants to start a patient on a biologic, they have to fill in a Blueteq form that states the patient’s diagnosis and history, including treatments they have previously tried and which failed to provide adequate help. The form then goes to the relevant clinical commissioning group for approval. In Wales however, the decision to introduce Blueteq is to ensure access to advanced therapeutic medicinal products and other cutting-edge biologics. To start with, the system will only be applied to ATMPs, but it will likely expand to other high-end drugs. It is hoped that the data from Blueteq will provide Wales with a good data set to support forecasting and to better understand what types of patients are likely to need these higher-end treatments. Currently, this is especially complex to monitor when it comes to advanced therapies that are authorised for multiple indications, since this makes it hard to keep track of what the therapy is being prescribed for. That type of population data is probably some way off as use of Blueteq is so new, but it’s a system that adds another element of information to the overall healthcare picture.

With so many rich sources of population data, Wales offers clinicians and researchers invaluable insights into patients, disease and different treatment pathways, creating opportunities for new avenues of research.