PRioRiTy project in Birmingham

Last Thursday I was invited to Birmingham to take part in the PrioRiTy project (Prioritising Recruitment in Randomised Trials)

I’d been contacted ages ago and Caroline Whiting, Research Manager, James Lind Alliance
had done all the right things to help by booking train tickets and hotel for me.

The aim of the day was to:
……discuss questions about how people are recruited to clinical trials and putting questions in order of priority so that researchers know which are the most important questions to work on.

They brought together people from all over the UK and Ireland who have been involved in designing, running or taking part in clinical trials. Not sure how I got invited, but very happy…..

img_4180

The ultimate aim is to help shape future research and make trails better for others, so I’m all for that. I’m about to end the MADE trial in January which had many things I would look to avoid next time, but inexperience led me not to question 2 years ago when I started.

Just before the workshop we were sent a list of the 20 questions to be discussed. We had to prioritise the questions into the 3 questions we think are most important in our experience and which 3 are least important in terms of making a difference to recruitment to clinical trials.

The event wasn’t until Thursday morning but distance meant I travelled down the night before, so was able to take advantage of the Christmas market in Birmingham –happy days🎅 More of that tomorrow…….
It was very cold, frosty and sunny again a we trundled out by the Humber……again……

img_4175

So the morning arrived and after a nice breakfast I made my way back to the station. I’d already discovered the day before where I caught the train to the Uni, but it was chocca. Luckily it was only a few minutes ride. The Murray Learning centre was the first building to appear, and there was a lady inside with a nice big sign to welcome us……perfect!

Upstairs we were met by rows of lovely cuppa teas………
Katherine Cowan was the first to say hello – we know each other from the world of Twitter and apparently we’ve worked together before🙄

There were about 30 others in the room – a real mix bag of professionals and 3 or 4 lay people.

Katherine started off proceedings – she is senior advisor to the James Lind Alliance.

The James Lind Alliance is UK based and involves people in deciding what gets researched – both participants, carers and health professional. What people, who are to benefit, want researched, often differs from the thoughts of researchers and the pharmaceutical industry.

The purpose was to agree a top 10 list of questions for research into randomised trials – a shared list. Which will be interesting to come to a consensus with such a diverse group of people.

It was a very unique day and they’re not aware of it having been done before…
50% of clinical trials globally fail to recruit. This is why ‘recruitment’ was seen as the biggest challenge. Initially, a few months ago,there was a general survey, which resulted in 1800 questions which needed to be whittled down to 496…..then the process continued, which came down, eventually, to the 20 questions we’re looking at today. They’re all deemed ‘unanswered’ questions. There many many that are ‘answered’ but these are all unanswered.

The health board in Ireland and NIHR here are interested in the results. There were 3 facilitators from the James Lind Alliance and people from the project simply observing.

The first session was simply to hear our views individually overall in 3 small groups.
Katherine was our facilitator and we first went round and introduced ourselves….

Then we had the amazing task of agreeing where of each of the 20 was placed………very good discussion and reasoning….

img_4182

While we were eating a yummy lunch, Katherine put the results from all 3 groups into excel to make a compromise top 20.
All 3 first groups had their number one in the top 10 for the overhaul list – phew! At least we didn’t have to start all over again.

The groups were mixed and matched and we did it all again with the new top 20…….different dynamics, different opinions……I was in a different room with different people and in those from the other group, were some very vocal voices…….wasn’t as much fun……

View of the uni from our room....
View of the uni from our room….

Tea break!
For the final session we were all together for one last time to decide the final standings of the top 20…brain disengaged so I’m glad the main decisions were made earlier….I purposely didn’t type anything for this last session as they asked us not to divulge the final top 10 as they’ll be announced on their web site. So we ended the day with a group photo down in the entrance – sadly I only got a piccie of the entrance

img_4186

Steve Milton recently described an email trail as being equivalent to a bag of tangled christmas tree lights. Well that’s how my brain felt at the end of a very long day…….and tomorrow I’ll give you the dementia version of getting here……..

Advertisements

About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s