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The PAPAA survey
We have a continual process of data gathering, which we do via all the processes of joining PAPAA. This largely unpublished data gives us a view of our demographic group, therefore allowing us to tailor our material to suit.
We also have been surveying people with psoriasis and psoriatic arthritis since our early origins for more than 20 years. Those rich qualitative data provides us with a real life view and also helps us to put forward a collective consensus of what it is really like to live with both psoriasis and psoriatic arthritis.
You can be part of that process and also know that whatever you say will be confidential and anonymous, it’s up to you.
We have now developed the PAPAA survey, which aims to build and add to those previous data results.
We will not ask for your name or contact details, all submission will therefore be anonymous. There are a few compulsory sections, to help us understand who we represent.
About you: The answers you give will help us to raise the true impact and how it affects real people, by providing a UK wide picture.
Quality of life: In order to give the true effect of psoriasis and or psoriatic arthritis, we would like to know how it affects your day-to-day life.
Research priorities: As someone who lives with a chronic disease, you have a unique insight into the issues that are important to you. We would like to gather these issues together and create a list of priorities that are important to people with psoriasis and psoriatic arthritis.
Final comments: Your chance to say anything else not covered in the other sections, these comments will help us to provide rich information that has context and is meaningful.
Be part of the bigger picture and get your opinions and views logged, so we can tell those who need to know exactly what you and others with these conditions actually feel, think and want to be said.
Data from the PAPAA survey has been used in submissions to support the patient perspective in health technology assessments, with the National Institute for Health and Care Excellence (NICE), the Scottish Medicines Consortium (SMC) and the All Wales Medicines Strategy Group (AWMSG).