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A national approach to collecting patient outcomes data


A group of professionals working around a table

Information about patient outcomes and experiences is vital to Value-Based healthcare. Measuring standard sets of outcomes across Wales allows for comparisons that drive service improvements

Information about patient outcomes and experiences fuels data-driven healthcare. Data quality counts: an essential first step to using data well is to decide what should be measured and to implement a uniform approach across the country. This sets a common baseline with which to compare future developments. It highlights services performing well from which others can learn.

Selecting the right Patient-Reported Outcome Measures (PROMs) and Patient Reported Experience Measures (PREMs) is a crucial step. For many conditions, there are several existing sets of outcomes which have been developed globally.

‘The most effective way to collect PROMs and PREMs is to agree on a common set of data across Wales. Otherwise, you’re comparing apples with pears.’

Kathleen Withers
Senior Researcher, Cedar

These include standard sets from the International Consortium on Healthcare Outcomes Measurement (ICHOM) with which NHS Wales has an established partnership.

Experts at Cedar built a database of existing tools and worked with clinical teams to identify the most suitable set to be used nationally. Patient experience teams in NHS Wales Health Boards and Trusts worked with clinicians and patients to agree on a common point in the patient journey at which to collect data. The public was engaged through a series of focus groups. A set of universal questions was agreed for use with all patients. Additional questions on outcomes, specific to the patients' condition, can be added by clinical teams. Patients are asked to complete the questionnaires using an electronic platform.

This approach ensures a consistent method of data collection across hospitals and organisations in NHS Wales. Clinicians can use the data for peer-learning; local patient experience delivers appropriate improvement programmes, and the result can drive the Prudent Healthcare agenda by ensuring resources are used well. 

What is Cedar?

Cedar is an NHS-academic evaluation centre which is part of Cardiff and Vale University Local Health Board and Cardiff University.

Cedar supports decision-making in healthcare by providing information and recommendations on healthcare interventions, medical devices and diagnostics, and NHS service configuration.

Nationwide implementation   

Once common sets of PROMs and PREMs have been identified, the challenge is to embed them nationally. To ensure datasets are comparable, questionnaires should be completed at the same point in the patient journey and using the same format. The information can then be shared by health boards and analysed at the national level.

This national approach fosters a culture of improvement and raises standards across the country, without preventing local innovation. 'We take a national approach to everything we do,' explains Sarah Puntoni, Programme Manager for Value-Based Healthcare. 'We can still have early adopters of new initiatives which can be expanded nationally. The important thing is to have a common minimum set of data for the whole country.'

Future work

The power of the information collected across NHS Wales to improve services will grow over time. When a large, robust dataset is available, clinicians will be in a position to predict patient outcomes with increasing levels of confidence. For patients, this will bring empowerment about treatment decisions: information about the outcomes and experiences of patients like them in Wales will drive informed choices.

By combining data on patient outcomes and experiences with information about the cost of care, it will also be possible to select interventions and technologies that deliver the best value. For example, PROMs and PREMs, combined with information on the cost of care over a 10-year period will give a fuller picture of how various treatment choices contribute to the goal of improving patients' lives. In practical terms, it may influence decisions about which hip implant, cardiac stent or rehabilitation programme to fund.

Research potential

The wealth of high-quality data collected in Wales offers enormous potential for clinical and academic researchers. Health boards are working with universities and others to explore how fresh insights can be extracted from the large and growing datasets that are being developed through PROMs and PREMs collection.

‘With a vast set of data like this, there is great potential to inform how we provide services in Wales. It could be used to study the value of implants or drugs and we are keen to collaborate with other researchers on this.’

Robert Palmer
Senior Researcher, Cedar