1. Set up slide

2. Warwick Diabetes Research & Education User Group Introducing the User Group Or to give it the full title Warwick Diabetes Research & Education User Group How's that for a title?

3. Warwick Diabetes Research & Education User Group • This talk is divided into 6 parts • The sort of people joining the User Group – motivation to join and stay on it. • How are we recruited. • What is involved? • Type of participation. • Communication. • And finally conclusions

4. Warwick Diabetes Research & Education User Group The sort of people joining the User Group & motivation Must be interested in the subject & willing to help others Some only come to find answers to their own problems - but soon drop out With the condition or as a carer you soon become an expert Once joined you soon pick up the medical side of things Remember “the more you learn, the less you know”.

5. Warwick Diabetes Research & Education User Group How to keep members on the User Group Involve them in actual things Seek their views on everything Ask them to evaluate ideas at an early stage Keep them informed of progress – or lack of it Sometimes their enthusiasm can motivate the researcher to try again when a funding application is turned down

6. Warwick Diabetes Research & Education User Group Pay reasonable expenses. [travelling, baby sitting etc.] Beware some people on certain funding could loose out if you pay too much – they may have their benefits stopped. If it is correct include food – diabetics must eat at a regular interval Lay down the terms of reference for the group – how and what it does Hold periodic meetings at a time and venue that is suitable We work from first idea right through to the final result including follow up after publication / implementation

7. Warwick Diabetes Research & Education User Group Put on tea/coffee then it will be a time for interaction where people can just talk and get to know each other If researchers are there as well then that is even better It will break down the “Them & Us” barrier We tackle all subjects. Some groups are formed for just one project

8. Warwick Diabetes Research & Education User Group How we are recruited Initial recruitment is always a problem Use the media and write to known groups Warwick Diabetes Care (WDC) did a radio and paper job in 2001 and got about 80 people to the inaugural meeting This dropped back to a handful when we got started Now the best method is by personal contact We do events, have a newsletter and an introduction pack and we mount presentations [like this one] when asked We have a web site on the University web

9. Warwick Diabetes Research & Education User Group What is involved and the User Group’s role It is fluid and changes with the Warwick Medical School (WMS) workings Now we do other things than reading & evaluating papers We are attached to what has become the Health Sciences Research Institute (HSRI) Now researchers from Clinical Sciences Research Institute (CSRI) are seeking our views After all we are the patients & carers The work can change from study to study

10. Warwick Diabetes Research & Education User Group Some work includes the following Much input to the Diabetes Users manual The telecare project & much in-house research projects Paperwork issued to patients in the form of questionnaires Assisted in work from Cambridge University & the Open university Much of this work can be done at home where we can read through papers and comment on them as required

11. Warwick Diabetes Research & Education User Group Type of participation Different members have different availabilities Some look at paperwork to see if it is understandable to lay people – not full of “jargon” Some can give talks about the Group Some join in workshop discussions We did work with the conversation map- a new idea being developed We have worked with a company that produces needles and pricking devices for blood testing – we evaluated the new ideas

12. Warwick Diabetes Research & Education User Group Some members sit on groups that look at our University courses such as the Certificate in Diabetes Care (CIDC) and the “in hospital” course 3 members assisted in the development of this “in house” course They give talks to student groups - CIDC and Masters 2 members sat in on a Punjabi course in Foleshill Sometimes members are approached individually to take part in other research. Whilst not the “official” line but if asked they usually agree to be involved Members have attended INVOLVE conferences and presented joint papers and mounted a workshop

13. Warwick Diabetes Research & Education User Group Communication Most members have internet access WMS administrator and the Lay Sec. can send out to all Quicker than post office mailing – gets replies sooner Developed a “guidance form” so that we know what is wanted – it goes out with paperwork We never turn anyone away because they do not have e-mail access. If so we use post or phone Some work is brought to meetings, discussed there and that is the end of it.

14. Warwick Diabetes Research & Education User Group Conclusions There are some pro’s and cons – but not the time to talk about them. There are more pros than cons be assured once the initial sort out has occurred We are not intruding upon your research – we are there to help you so that the outcome will be worth while to you (and us) We are a sounding box for you to whom you can turn for help We are all trying to eliminate the suffering of all with the condition

15. Warwick Diabetes Research & Education User Group All this can be applied to all types of research – not just diabetes As a User Group the main thing is to find the work interesting and to enjoy doing it. Or have fun When that stops then it is time for you to stop as well

16. Warwick Diabetes Research & Education User Group now its question time Thanks for listening