Patient Reported Experience Measures (PREMs) survey data handling

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 survey forms should be returned directly to the QI team using the freepost envelope provided. Alternatively, they can be handed to the CF team, who will send them to Cystic Fibrosis Trust.

When the surveys arrive at Cystic Fibrosis Trust, they will be stored in a locked cupboard and opened only by a member of the Quality Improvement (QI) team.

The data will be processed in one of two ways:

1. The surveys will be scanned directly into folders on Box, our internal storage system. Box is password-protected and accessible only to the QI team. The data will then be entered into SurveyMonkey, or
2. The data will be entered directly into SurveyMonkey, which is password-protected.

We will keep all paper and online surveys for three 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.

The data will be processed in-house using Excel and/or Stata, a statistical software package. The programming and steps used in the analysis will be recorded so that the results can be reproduced if needed.

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

1. Centre or network summary: This shows your centre’s results for each question, including graphs and anonymised free-text comments. It is sent directly to your centre. We can also email you a copy if you provide your email 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.