Patient Reported Experience Measures (PREMs) survey data handling

The majority of individuals completing the survey will access it online using Survey Monkey, through links or QR codes sent in a PDF invitation letter or paper letter from their centre. Your responses will be password protected and are not visible to your CF team.

Paper surveys

Paper survey forms in English, Welsh, Polish and Urdu will be available by contacting the QI team and should be sent directly to the Trust using the freepost envelope provided. Please be aware foreign language responses will be translated by an external company.

When the surveys arrive at Cystic Fibrosis Trust, they will be stored in a locked office and opened only by a member of the Quality Improvement (QI) team or a Quality Improvement volunteer. Some of the surveys may be processed by a home-based member of the Quality Improvement team – if this is the case, a batch of surveys will be sent to her and stored securely in a locked box.

Data will be processed in one of two ways, dependent on who is processing the data:

1)    Scanned directly into folders on Box, our internal storage system, which is password protected and accessible only by the QI team and volunteer. They will then be inputted into Survey Monkey.


2)    Inputted directly into Survey Monkey using the online survey format.


We will keep all paper and online surveys for 2 years after date of reception, in case of any data queries. After this point paper documents will be destroyed as confidential waste and online surveys will be deleted. The data files created will be kept, to allow comparison of centres’ results over repeated survey rounds.

Survey results

The data will be processed in-house using Excel and/or Stata, a statistical software package, with the programming or steps taken recorded to ensure reproducibility if required.

2 reports will be produced from the data you provide:

1)    Centre/Network report, which will show your centre’s results for each topic compared to a UK-average, with free text comments presented as themes. This will be sent to you by e-mail if you have provided your e-mail address at the end of the survey. Alternatively, your centre will be sent both an e-mail attachment with the report, which could be forwarded to patients, and a printed version of the report.

2)    UK report showing UK averages for each survey question area, available on Cystic Fibrosis Trust website.

If you have any comments or concerns, please feel free to contact us on


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