Patient Reported Experience Measures (PREMs) survey data handling

person with CF and nurse

Patient Reported Experience Measures (PREMs) survey data handling

How we collect, process and report on your data

Our UK-wide patient experience survey helps CF centres find out what people with CF and their families think about the health care they receive so they can identify areas of best practice and opportunities for improvement. Here you can find out how we handle the data you give us when you take part in the survey.

  • Online surveys

    The surveys can be accessed online (via SurveyMonkey) through links or QR codes sent in a PDF invitation letter, or a paper letter from the CF centre. Responses are password protected and are not visible to CF teams. 

  • Paper surveys

    Paper survey forms should be sent back directly to the QI team using the freepost envelope provided or can be handed back to the CF team.

    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 SurveyMonkey.
    2. Inputted directly into SurveyMonkey using the online survey format.
  • Retention 

    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. 

    Two types of reports will be produced from the data you provide: 

    1. Centre/Network report: This shows your centre’s results for each question, with graphs and anonymised free text comments. This is sent directly to your centre. A copy of this can also be sent to you by e-mail if you have provided your e-mail address at the end of the survey. 
    2. UK-wide report: This shows the overall findings from all survey responses for each survey question. It also provides a thematic analysis of free text comments with anonymised example quotes. This is sent to CF centres and made available on the Cystic Fibrosis Trust website. 

If you have any comments or concerns, please feel free to contact us at [email protected].

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