Patient-Reported Outcomes Measures – PROMs in short – are health assessments that look and feel like a questionnaire.
PROMs have been designed and tested with patients and clinicians for specific diseases, such as lung cancer, or your general health and quality of life. They look for changes in people’s health pre-post treatment and over time to understand changes in people’s quality of life.
PROMs are a systematic way for patients to tell us about their care-experience and health status. They help clinicians monitor patients’ progress and provide strong evidence on the effectiveness of care and treatment. They can also be used to:
Why are they being introduced now?
PROMs are not new, they have been used in health research for a long time but, as people’s needs become more complex and the treatment options more varied, PROMs are becoming more important. They can be used in everyday care to ensure all care delivered is effective and is focused to try and meet each patient’s needs.
The Value in Health Programme in Wales is using technology to help improve the health and wellbeing of people in Wales, including by making PROM collection simpler and easier. This is in line with the Welsh Government Strategy on Healthier Wales and Informed Health and Care.
How will they work?
If invited to take part, health boards and trusts will ask patients to complete a simple assessment at different stages of their treatment. People may be invited to do so remotely or whilst they wait to attend an appointment.
What if I do not have access to the internet?
If you are unable to complete the questionnaire because you do not have access to the internet, please consider the following:
1. Do you have a family member, friend, or neighbour who has access to the internet and will allow you to use it to complete the questionnaire?
2. Is there a public library nearby that you could use to complete the questionnaire?
3. Is there anywhere else locally that has internet access you could use to complete the questionnaire, i.e. a support group or internet café?
If you are still not able to access the internet to complete the questionnaire please be reassured that this will not delay your appointment or impact on the care/treatment you will receive.
What happens if people can’t or choose not to take part?
The PROMs assessments are not compulsory and should you be unable to take part this will not impact your waiting time or the care/treatment you will receive.
You may be asked to complete the questionnaire again once you attend your outpatient appointment but this will depend on the clinic and completion is on a voluntary basis. However, we strongly believe that the information collected is important and we recommend that all patients take part, where possible.
How will the data be used?
Most PROMs questions have weighted scores which means that clinicians are able to use individual answers or combine all answers to create an overall quality of life score, which can be used to monitor changes in symptoms and quality of life.
The responses can help patients and their clinical teams make an informed decision about what treatment is most suitable for the individual’s condition, needs, and circumstances.
However, the data collected, once added to those of other patients, can help health boards and clinical teams improve services and plan for the needs of the future, and in time it can also be used to benchmark across organizations.
Moreover, once all patient’s identifiable information has been removed (such as name, address, NHS number, year of birth, etc) and responses from all patients are put together to create a ‘data set’, this data set can be used in research and to advance treatment development.
Will the information be shared with external organizations?
Individual questionnaire responses will not be shared outside NHS Wales. However, in time, we hope to be able to use the data for research and to advance the development of treatment. This may mean sharing data with non-NHS Wales’ organizations. Any information shared with non-NHS Wales organizations in the future would be tightly controlled and strictly follow all Information Governance best practices and regulations.
Please note: As this is a new program the website is still under development but more information will be uploaded to it on a regular basis.