Upload
dontae-hendy
View
212
Download
0
Embed Size (px)
Citation preview
Research User Group
Start up slide
Research User Group“A Research user group”
Who we are
What we do
How we do it
Can you do it ?
Research User Group
The overall picture an Introduction
I am from Warwick Medical School Research User Group
Set up under the NHS INVOLVE “consumers in Research”
Group formed in 2001 to aid researchers
Because we are affecting NHS policy (we hope) we must get ethics approval for all we do.
We are not guinea pigs
We assist in the development of studies
Some members can be asked to do other things
Research User Group
• I will split my talk into 4 sections
• 1. what I do as an individual
• 2. what the User Group does
• 3. how to get a group up and running
• 4. some examples of the work
Research User Group
About me – one of the group - well its lay secretary
Retired 76 year old
A type 2 diabetic for 17 years
Joined local volunteer group of Diabetes UK
They had a letter from Warwick University asking for interested people to attend an inaugural meeting in 2001
(Warwick University is in Coventry by the way)
80 people attended – it was also put out on local radio
My wife and I attended – she is a carer
Interested in trying to find a cure for the condition
Research User Group
Had a working life in industry not much formal qualification
No I do not have a degree
Understood something about the condition
Could read and edit papers
Early meetings taught me to understand jargon
Can understand “uni speak”
So I can make papers readable to ordinary people
Soon got involved in other work
Research User Group
Projects such as
Diabetes Manual for type 2
Telecare phone project
Foleshill Punjabi project
Research User Group
Got affiliated to INVOLVE
Went to conferences
Gave talks to students
Assisting in developing modules at WMS
Helped with Involves new PIP and other pamphlets
Gave a joint presentation at the last Involve conference
I never know what will come next but –
Have a choice to say yes or no
Most paper reading is done at home via e-mail
Research User Group
Now about the User Group
We are recruited from
local Diabetes support groups
other events
An invitation may be sent to join in the work
By personal contact
Research User Group
Diabetes Research User Group at
Warwick Medical School
Research User Group
We advise the Research staff
On all aspects of diabetes research
From first idea to final result
Research User Group
So what does all this mean to a User Group member?
When the group started there was an amount of “them & us” about it.
“What are these amateurs doing in our cosy academic world?
What have we got into, and what language are they speaking?
Research User Group
With a good effort on both sides them v us soon dissolved and we are now one where much cross information
takes place.
As users we were soon called the “experts” by the research staff.
There were, and to some degree still are a number of pro’s and con’s about such an amalgamation of minds.
As you will see later the pro’s far outweighing the cons.
Research User Group
Meet every 2 months
travel expenses are paid
Funded from funding applications
Work is spread via e-mail where possible
Jargon sessions help
Recruiting is by personal contact
we do have an introduction pack
Research User Group
We have a guidance form for researchers to fill in
Feed back sessions are put on with food
Research User Group
Talking about jargon – here are a few examples can you get them?
MCQMulti choice question
RCTRandomised Control Trial
QoLQuality of life
Control GroupSelf explaining but ……..
But I digress
Research User Group
Projects include• The Diabetes Manual• Telecare study• ASKING – diabetes series
That stands for
Assessing Self efficacy and
Knowledge In Negotiating
Goals In Diabetes
Research User Group
We produce a newsletter every 6 months
sent out to as many people as possible
Research User Group
Other activities include– Talks to various student groups– Assisting with course modules– Filming for many reasons
There are many pros and cons to the user group
Research User Group
On the Con sideFrom the Researchers viewpoint
Could be a funding burden
Could cause more work
May not result in good publications
Research User Group
On the Con sideFrom the Users viewpoint
Difficult to take time off work to attend daytime meetings
Most user group members have Type 2 diabetes
Difficult to attract a cross section of people with the condition and/or their carers.
Members tend to be older than average and are mainly white
Research User Group
On the Pro sideFrom the Researchers viewpoint
More likely to get research funded
Thought to improve dissemination of research activity and thus ultimately research findings
Improves recruitmentProvides a real-world grounding [for researchers not (currently)
engaged in clinical activity]
Energising when rejection/failure occurs
Users do make a real contribution
Research User Group
On the pro sideFrom the users viewpoint
Not very time consuming
Able to give views from patients actually using primary care (perception that this is often unheard!)
All members have the opportunity for an equal input
Members help refine funding bids before being made
Research User Group
On the pro side
From the users viewpoint
Members are generally willing to give help and support to research programmes
When bids are rejected members share the disappointment and also encourage adapting the bids for future success
Know that we do make a real contribution
Research User Group
The diabetes manual for type 2 The telecare support study Various papers Researchers from Cambridge University Researchers from the Open University We are also recruited to be actively involved in
some studies
Some of the work includes
Research User Group
A typical meeting agenda.
1. Welcome and introductions.2, Apologies3. Matters arising from previous meeting4 Secretary’s Report e.g. Conference report,
new members, correspondence5. Research Items6. A new proposal e.g. Feedback on a questionnaire being designed. Discussion on a patient information leaflet.7. Up-date on Research Projects
8. A talk by a visitor 9. Any Other Business10 Date and time of next meting
Research User Group
Getting a group going
Address the why and what first
Set out terms of reference
Where and when to meet
What sort of work is wanted
Involve all members
Sort out payments – beware other payments might be affected such as pensions, tax rebates and the like
But most of all have FUN
Research User Group
The next is an icast made by the Research User Group and is on the University web site
Under the heading “Patient Involvement” it describes it as
How researchers at WMS are working with Diabetes Patients to guide research activity.
So sit back and watch this short icast. It lasts about 3 minutes.
Research User Group
Research User GroupThat is itAs I said at the start “Can YOU do it?
Yes I am sure that you CAN
Go on give it a go. But most of all HAVE FUN
Finally thanks for listening
Any questions? The floor is yours