Frequently Asked Questions
What are PROMs?
Patient Reported Outcome Measures (PROMs) are a systematic way for you to tell us about your care, experience and health status. They help us monitor your progress and provide strong evidence on the effectiveness of care and treatment. They can also be used to:
- Help you and your clinical team decide what care is best for you;
- Compare performance across hospitals and health boards;
- Help us plan future service developments.
Why are they being introduced now?
This is part of a national programme across Wales using technology to help improve the health and wellbeing of people in Wales. It is in line with the Welsh Government's strategy on Prudent Healthcare and Informed Health and Care.
How will they work?
In time all patients in Wales will be invited to complete on-line questionnaires about their health, but for now, we're applying this programme in phases.
Some Health Boards have already started collecting PROMs with others hoping to do so in the near future. If you would like to find out whether your Health Board has started collecting PROMs, please keep checking this website for updates on progress for each Health Board.
If you are invited to take part we will ask you to complete a simple questionnaire at different stages of your treatment. You will receive a letter from the Health Board, shortly after a referral by your GP. This letter will confirm that your referral has been received by the Health Board and will contain a website address for you to access the PROMs questionnaire. It will also contain a unique reference number for you to enter into the relevant box on the first page of the website.
Some Health Boards may choose to collect PROMs during your clinic appointment. If this is the case, someone will discuss this with your during your visit to the hospital.
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:
- 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?
- Is there a public library nearby that you could use to complete the questionnaire?
- 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 you will receive.
What if I am unable to answer the questionnaire myself?
On occasion some patients may not be able to complete the questionnaire themselves. This could be for a number of reasons but the programme would like all patients to be included and therefore we must endeavour to support anyone who is not able to complete the questionnaire.
If you are unable to complete the questionnaire please consider the following:
- Do you have a family member, friend, carer or neighbour who can help you to complete the questionnaire?
- Are you a member of, or do you have access to, any support groups whereby someone in that group may be able to help you to complete the questionnaire?
If there is someone who will be able to assist you in completing the questionnaire, please be advised that the information and views you provide should be your own and not those of the person assisting you.
If you are still unable to complete the questionnaire after you have considered the above, please be reassured that this will not delay your appointment or impact on the care you will receive.
What happens if I choose not to take part?
The PROMs questionnaires are not compulsory and should you choose not to take part this will not impact your waiting time or the care you will receive.
You may be asked to complete the questionnaire again once you attend your outpatient appointment but this will depend on the speciality and 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.
Will I be able to answer the questionnaire during my visit to hospital if I cannot complete it at home?
At this stage there will be no provision for patients to complete the questionnaire in the hospital setting. However, in the future provision may be given, in some specialties, for PROMs questionnaires to be collected in clinic if patients are not able to complete them at home for any reason.
If the clinic and speciality is able to offer a facility for you to complete the questionnaire during your visit to hospital, it is important that you are given the opportunity to complete the questionnaire without being observed by staff. However, a member of staff may need to demonstrate the use of the hand held device to you, or a family member or friend, and answer any questions that you may have. Staff will also need to ensure the right questionnaire is uploaded onto the hand held device for you to complete. If you require assistance completing the questionnaire, staff should be able to go through it with you.
How I feel and my heath changes all the time, how can I complete the questionnaire?
We know that many conditions make our health status very changeable and how you feel now may be very different from how you felt yesterday or how you will feel in a few hours' time, especially if you take medications to help you manage (such as pain killers).
The questionnaires are meant to give us a snapshot of your health, and we know they only give us a very limited view of how you feel today, but it's important that you complete them thinking about how you feel at the time of completing the questionnaire.
So if at time of completion you are managing your pain through medication, please respond about how you feel right now, not how you would feel if you hadn't taken your medication.
Who will be asked to take part?
At present, the questionnaires used are most suitable for adults (over 18 years old) and therefore anyone below this age should not be asked to complete one. As the programme progresses, more questionnaires will be added, allowing all age groups to take part in the programme.
If you receive an invite to complete a questionnaire and you are under 18 years of age you do not need to complete it.
Will I be asked to consent to anything?
Yes, you will be asked if you consent for your information to be shared with healthcare professionals involved in your care, and for your responses to be linked with other NHS databases or used for service improvement, planning and research purposes.
How will the results be reported back to me and my clinician?
Once you submit your questionnaire you won't be able to save it or print it, however your responses will be immediately available to your clinician.
You can ask for feedback during your outpatient appointment; but feedback will be dependent on staff accessing the information at the time of your outpatient appointment, and this may not always be possible depending on the clinic you will attend.
As the Programme grows and becomes more routine this will change and patients will be able to get feedback and see their questionnaires after submitting.
How are the questionnaires going to be used?
Your responses will be used to calculate a quality of life score which can be used to monitor changes in symptoms and your quality of life.
The responses can help you and your clinical team make an informed decision about what treatment is most suitable for your 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 organisations.
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 organisations?
Individual questionnaire responses will not be shared outside NHS Wales. However the National Programme and Health Boards will, in time, be able to use the data for research and to advance the development of treatment. This may mean sharing data with non NHS Wales organisations. Any information shared with non NHS Wales organisations in future would be tightly controlled and no patient identifiable information, i.e. name, address, date of birth, NHS number, etc. would ever be made available.
The Programme is considering options, risks and benefits of such an approach. Currently sharing of data is a matter for each individual NHS Wales organisation to agree and manage locally.