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Patient Reported Experience Measures (PREMs) survey data handling

You can complete the survey in two ways: using the paper form, or online via Survey Monkey.

Paper Survey Forms

Paper survey forms will be available at your cystic fibrosis (CF) centre/clinic. Once completed, they should be handed to a member of the CF team, in the envelope provided.

Surveys will not be opened by anyone in the CF team. They will be securely stored at your CF centre and sent to the Trust every two months in batches.

If you take your form home to complete, please use the freepost envelope provided to send it directly to the Cystic Fibrosis Trust.

Upon arrival at the Trust, your surveys will be stored in a locked box and will be accessible only to members of our Quality Improvement team, who will scan them onto our secure file system (Box) and input the details into Survey Monkey.

Online Survey

You also have the option to complete the survey online using Survey Monkey, which you can access through our Quality Improvement page.

In both cases, your responses will be kept secure via a range of organisational and technical measures and will be accessible only to our Quality Improvement team.

Retention

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

Survey Results

3 reports summarising the survey results will be produced from the data you provide:

1. A patient report, which will show your centre’s results for each topic compared to a UK average, with comments presented as summarised themes. This will be sent to you by e-mail if you have provided your e-mail address at the end of the survey. Your centre will be sent an e-mail attachment with this report.

2. A centre report, with centre-level data compared to UK averages and free text comments available. Where individuals are identifiable in the comments, these will be anonymised.

3. UK report showing UK averages for each survey area, available publicly through the Cystic Fibrosis Trust website

If you have any comments or concerns, please contact the Quality Improvement Team on QI@cysticfibrosis.org.uk


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What is CF?

Cystic fibrosis, or CF, affects the lungs, digestive system and other organs, and there are around 10,500 people living with it in the UK.

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