Transcript Discovering the research priorities of people with

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
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
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
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
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
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
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
Results
• The value of exercise
– Activity has a positive role
• Self-management
– Taking responsibility for yourself
– Denial of the consequences of diabetes
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
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
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
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
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
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
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
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
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
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
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
Contact details
• Ken Brown, General Practitioner
– Family Medical Centre, 171 Carlton Road, Nottingham,
NG3 2FW
– (0115) 950 4068
– [email protected]
– We thank Trent Focus for financial support towards the
costs of this project