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