1. Discovering the research priorities of people with type 2 diabetes Ken Brown, David Murphy, Caroline Kenyon Co-researchers: J Dyas, J Cummings-Jones, Y Khalil, P Riaz, P Chahal

2. Background Diabetes is one of the commonest chronic illnesses in the UK and is getting more common NHS contributed nearly £20 Million in 2002-3 to research on diabetes Traditionally experts decide on research priorities Involving consumers in research may make research more focused on the important questions to answer

3. Aims of the Study To find out some important aspects of the lives of people with diabetes in inner city Nottingham To define and prioritise some research themes from these important areas To compare and contrast these research themes with the Department of Health’s research priorities To then use consumers’ research themes as a template for further research

4. Methods Participatory Approach –established a ‘reference group’ of health professionals, researchers and consumer representatives (Diabetes UK and Self-Help Nottingham) –reference group defined the research question, advised on the target participants, suggested the methods to be used and helped with the recruitment of participants –researchers who understood the cultural background, languages and dialects of the local diabetic community joined the research team

5. Methods Focus Groups –six groups of varying cultural mix –similar method used in each group, based on common researcher training –appropriate setting in community centres and local surgery –validation of findings & refinement and prioritisation of the final research questions involved participant representatives on the research team

6. Results Areas of their lives that participants felt were important Improving information –improving the quality and consistency of information –cultural needs to be catered for Raising awareness in the general public –supermarkets and in catering –in the workplace –being generally understood, lack of media attention Improving information about food –better information –improved food labelling –duty of supermarkets and caterers to account for diabetic people

7. Results One-to-one support –value of health professionals –friends and family Service delivery –importance of regular checks –fast access to specialised care when needed –sensitivity to cultural needs (lifestyle, language and diet) Prevention of diabetes –screening, especially in high risk communities –prevention of obesity in children and young people –role of exercise and other lifestyle issues in prevention of diabetes and prevention of complications Co-morbidity –other ailments prevent good control of diabetes

8. Results The value of exercise –Activity has a positive role Self-management –Taking responsibility for yourself –Denial of the consequences of diabetes

9. Comparisons with DoH Research Priorities and Diabetes Lack of medical or scientific based themes in our study Less importance placed on prevention and treatment of complications of diabetes Many similarities in service delivery based research themes and in prevention and screening of diabetes More emphasis on receiving information and understanding foodstuffs better

11. Caroline Kenyon: who am I? –Type 2 diabetes for 14 years –Housewife with a husband and 2 children –Grandmother had type 2 diabetes, she died of diabetic coma –My husband has diabetes –I am concerned about my children developing diabetes in the future –I also have angina, blood pressure

12. Who do I represent? –I am involved in the “Expert Patient Programme”, the “Patient and Public Involvement” forum and the “Patient Advisory Liaison Service” –I am a member of the Nottingham Diabetes UK voluntary group committee –I am on the steering committee of Rushcliffe PCT diabetes group –I run a small support group for people with diabetes and/or heart disease

13. Why did I get involved? –I can’t say no –I wanted to help others with type 2 diabetes –I wanted to meet other people with diabetes –I wanted to swap ideas with other diabetic people, what did they want from their diabetic team –I wanted to meet people from other cultural backgrounds with diabetes

14. Why should Diabetes UK be involved? –To work with researchers within the NHS –To influence the type of research carried out –To raise the profile of diabetic peoples’ needs with doctors and nurses working in the NHS –To raise the profile of diabetes in the general public –Raises the profile of Diabetes UK

15. How did Diabetes UK get involved? –Attended a meeting with researchers about what research should be done in diabetes in Nottingham –Decided team should look into research priorities from a patient view

16. How did I get involved? –Attended a focus group –Attended a meeting to discuss the findings of the focus groups –Helped put together this talk

17. What did I get out of getting involved? –A feeling of satisfaction that relevant research has been promoted –Type 2 diabetes is particularly being highlighted –Doctors and nurses may have better skills in diabetes in the future –Meeting other people with diabetes

18. What am I going to do next? –To carry on working with diabetes researchers in Nottingham –To take forward some of the research questions that we have highlighted –Influence the way Diabetes UK funds local research

19. Conclusions Limitations of our study –Participants in our study were not representative of all type 2 diabetic people –areas of importance do not always equate to researchable themes –consumers may not appreciate the scientific basis of diabetes and its potential to change their life –consumers may not know about existing research and where the gaps are –the important areas highlighted may have been suggested by the structure of the focus group topic guide –This study was difficult to carry out

20. Conclusions Where this study could help –a consumer perspective is given –real people with diabetes are given a voice –contributes towards a comprehensive scoping exercise for research priorities –a programme of research, where outcomes lead to some improvements that people with diabetes have said they are looking for, is valuable and meaningful

21. Contact details Ken Brown, General Practitioner –Family Medical Centre, 171 Carlton Road, Nottingham, NG3 2FW –(0115) 950 4068 –ken.brown@gp-c84018.nhs.uk –We thank Trent Focus for financial support towards the costs of this project