What would you think of a Research forum?


#1

You may have noticed that recently, we’ve posted two opportunities to take part in research--a nutrition survey and compulsive behaviours study.

http://www.parkinsons.org.uk/pdsforum/posts.aspx?forum=daily-life&topic=how-do-you-get-nutrition-information

http://www.parkinsons.org.uk/pdsforum/posts.aspx?forum=parkinsons-uk-consultation&topic=compulsive-behaviour-research

We pointed out in a follow up post stating that supporting research is a large part of what Parkinson’s UK does and that we make people with Parkinson’s aware of research and research volunteering opportunities in various ways including our website, Progress magazine, Twitter and Facebook.

Following up on this post, we are now considering the possibility of having a Research forum here. This would be an opportunity for the research team to:

make users aware of opportunities for participating in research;
share information about ongoing research; and
consult opinions on future research.

It is also an opportunity for forum users to engage in discussion around the work Parkinson’s UK is doing as a part of a drive to find a cure and better treatments.

Is this something that forum members would like to see here? What kind of information would you like to see about research? Could you forsee any problems with such a forum?

We look forward to hearing your feedback on this.

Ezinda



#2
Would this be a worldwide forum as it is at present or confined to the UK?

During my 10 years of Parkinson's, I have volunteered locally (Bangor University, Wales) where researchers visited me at home, and long-distance completion of questionnaires.

I would welcome such a Forum, especially the input of researchers.
Mary

#3
Me too! count me in
Renee

#4
Would this be restricted to research supported by PUK?

#5
on the face of it brilliant.

#6
Hello all,
Thanks for the responses.

We're just beginning to consider this idea so we are short on details. It seemed a good idea to discuss it with forum members first to see if there was any support. The idea was that if it was interesting to you, we could then work on the details.

So obviously, nothing has been decided for sure as yet. However, Mary and Annebernadette, the idea would be to discuss both Parkinson's UK and non-Parkinson's UK research and research being done around the world.

As well, there may be some room for research team staff to provide comment on posts like this: http://www.parkinsons.org.uk/pdsforum/posts.aspx?forum=treatments&topic=a-reason-for-optimism


Again, nothing is set at this point and we would hope to have as much input as possible from forum users in setting the guidelines for this if we decide to go ahead.

#7
I think it's a great idea.

#8
A research forum now theres a radical concept
Would we be considering active patient led projects as well as the provision and sourcing of patients for research trails, surveys and other initiatives. A stand alone research forum would be a great filter for more rapid access to the patient as a resource to the researcher.The person with the illness is the most important part of the whole research process.We are a valuable commodity.
Knowledge and education are the tools that empower self direction in the understanding of the devastating potentials of this disease.The interactions that occur on a daily basis,on this forum are effectively patient led research at a basic level in that questions asked and ideas or answers given.The benefit is an instant answer to an immediate problem.The value of this exchange is worthy of recognition. We are well informed reliable sources of all things PD because we live it. Each day usefull DATA IS POURED INTO THIS FORUM by Each PWP who posts.

• .Posts can be viewed by anyone who comes to look no login required, that means data is available to anyone who wants to use it.Personally I have no objection,survey monkey,should be welcomed I want a cure and research at any level is a welcome caller
• Enhancing communication between healthcare practitioners and patient and identifying focused interventions is important in speeding up the research process and needs to be better facilitated
• How many people with PD are employed by the society and in what capacity
• Care models are dated we need multiple models of care or more ambitiously a model specific to an individual is the health framework of the future .
• Who asks and listens to the PWP,Consultation yes but we don’t as yet have a truly representative voice.Advocacy is one thing and patient experts another group are emerging from that.

Quality of life has no time span Parkinsons devasted my life in some respects but I now feel it has given me more in terms of personal growth than I could ever have imagined at the outset.
The patient of today is very different empowered by access to knowledge,that will change the face of medicine forever.We are at a crossroads in the sustainability of health care.Research is money a livlihood to some to me it is my life my future
My need has urgency that is not always appreciated,

#9
Anything that gives information, maybe hope, and in which we can volunteer to help ourselves, must be a good thing. Sounds constructive and positive to me.

#10
yes would be interested

#11
Dear all,

Further to your posts above, we'll be launching a new research forum on the site on Monday, April 11.

Look out for the new forum then!

Thanks,
Ezinda

#12
Hi Ezinda, the new research addition to the forum sounds so exciting. I'm sure we will all benefit from it in someway. I look forward to seeing how it will be presented and the content.

Glenchass

#13
Hurrah,hurrah What a good idea.

#14
i thinks it would be a good idea cus ,few months agon a lady came down from london from resurch side,to give our surport group a 2 hour chat ,and the time flew past and there was somuch more to here from her,that 2 hours was well spent ,and to have a resurch part on the forum would be very good to have for me long as there ant no posh words used and long ones :wink:

#15
The new Research forum is now open! You can find it below the Treatments forum.

#16
Research of any kind has to be welcome. However, and correct me someone if I've misunderstood but nowhere do I see mentioned, research in the form of listening to sufferers and carers.

Repeatedly I read in posts that individuals feel they have experienced symptoms for many years yet when mentioning this to any medical professional that is totally rejected.

#17
Have just looked in research thread. Seems I was wrong. Let's hope so.