“A Research user group” Who we are What we do How we do it Can you do it ?
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
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
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
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
Projects such as Diabetes Manual for type 2 Telecare phone project Foleshill Punjabi project
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
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
Diabetes Research User Group at Warwick Medical School
We advise the Research staff On all aspects of diabetes research From first idea to final result
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?
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.
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
We have a guidance form for researchers to fill in Feed back sessions are put on with food
Talking about jargon – here are a few examples can you get them? MCQ Multi choice question RCT Randomised Control Trial QoL Quality of life Control Group Self explaining but …….. But I digress
Projects include The Diabetes Manual Telecare study ASKING – diabetes series That stands for Assessing Self efficacy and Knowledge In Negotiating Goals In Diabetes
We produce a newsletter every 6 months sent out to as many people as possible
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
On the Con side From the Researchers viewpoint Could be a funding burden Could cause more work May not result in good publications
On the Con side From 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
On the Pro side From the Researchers viewpoint More likely to get research funded Thought to improve dissemination of research activity and thus ultimately research findings Improves recruitment Provides a real-world grounding [for researchers not (currently) engaged in clinical activity] Energising when rejection/failure occurs Users do make a real contribution
On the pro side From 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
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
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
A typical meeting agenda. 1.Welcome and introductions. 2,Apologies 3.Matters arising from previous meeting 4 Secretary’s Report e.g. Conference report, new members, correspondence 5.Research Items 6.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 Business 10 Date and time of next meting
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
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.