Psoriatic Arthritis survey part 2

Rascal

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Psoriatic Arthritis Priority Setting Partnership Survey 2 (surveymonkey.co.uk)


Last year I posted part one of the Psoriatic Arthritis Priority Setting Partnership survey and a good number of responses came from here. Thank you

Since then, we have collated all the results, come up with a set of indicative questions, looked into whether research has been done or is being done in those areas across the world and finally narrowed the questions down to this final survey. Its been tough going through the Covid crisis as all our meetings were through Zoom but we are now getting closer to the end of the process. I have been a patient representative on the steering committee and have played a full part in the whole process which is being lead by an eminent Oxford based Professor of Rheumatology and a Senior Lecturer in Dermatology from Manchester University who is a key member of my own Professors team based at Salford Royal.

My responsibilities have been to make sure the patient voice is heard at all the stages of the process and give my insight and add my experience to the steering committee so that it focuses on patient needs rather than on medical desires. For my trouble i will get accreditation in the BMJ when the final paper is released and of course the satisfaction of knowing i have possibly helped shape research in this area so that patient outcomes are of a much higher standard.

Those of you who did the survey last time really helped as their is often an imbalance in gender when these surveys are done and with BM being a male dominated forum I hope that many of you fella's and indeed ladies will take part. You can take part if you have Psoriatic Arthritis, are a carer for somebody with Psoriatic Arthritis or are a family member of a person with Psoriatic Arthrotos. You are also free to share the survey i have posted above with friends and relatives and if you follow me @rascalmcfc on twitter you are free to retweet the survey once it is online.

There is also an opportunity for people to get involved in the final workshop, which will be held on Zoom and organised by the James Lind Alliance. Their will be renumeration for being involved , at this moment I am not sure how much it will be or what form it will take but it is likely to be Amazon vouchers. At the final workshop the research priorities will be set and then shared to the research faculties across the country so you would be making a real difference. If you would like to get involved you can either express an interest via the survey or PM me your details and i will pass them on to the event organiser. I will be attending the final workshop as an observer so you would get to say hello to me, what a thrill hey :))

Please do help if you can, a lot of hard work in very testing times has gone into this and your help would be really appreciated.

Cheers

Rasc
 

Rascal

El Presidente
Joined
10 Jan 2005
Messages
62,522
Location
Paderne
Team supported
RCD Espanyol
Please do answer this if it applies to you.

If you want to speak privately you can PM me in confidence.

Cheers
 

Rascal

El Presidente
Joined
10 Jan 2005
Messages
62,522
Location
Paderne
Team supported
RCD Espanyol
Lads, come on, we still do not have enough men filling in this survey.

We also need people to take part in the final selection, there is reimbursement and it will done over Zoom.

Contact me by PM if you want, it will be in confidence.

I have put my heart and soul into this lads so if you can please help, share with anyone you know, if you see me tweet it , retweet it i am @rascalmcfc

Cheers
 

ashytheblue

Well-Known Member
Joined
16 Jan 2009
Messages
320
hi, I have just filled the survey in. feel free to message me about the workshop.
 

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