Discovering the research priorities of people with type 2 diabetes

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

10. Discovering the research priorities of people with type 2 diabetes

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