Enhancing Consumer Involvement in Primary Care Research

1. How an evaluation helped us to develop consumer involvement, find out what does and doesn’t work and how involving consumers impacted on research Rachel Nickeas Service User and Evaluator Jane Stewart Research Fellow/ Lead for Consumer Involvement in Research Nottingham Primary Care Research Partnership hosted by NHS Nottinghamshire County

2. We will be talking about … • Consumer involvement in primary care research • How we: • Developed it • Evaluated it • And the difference it made to research

3. We will highlight… • The things that impact on developing consumer involvement • Training • The importance of the group • Support

4. Challenges at the beginning… • Consumer involvement new to project lead • Varied research programmes • Developing the group • Wanted to be collaborative • Small amount of time and money

5. Judge the value of what we were doing • Add to the evidence base • Developmental evaluation • Immediate practical focus • Independent evaluator • Trent Research and Development Support Unit ‘Research Capacity Building’ Award

6. Collecting and analysing the information • Observation: • Meetings, training sessions • Semi structured interviews: • At 3 time points • Phone and face to face • Written feedback: • Consumers - training sessions • Consumers and Researchers meetings • Thematic analysis • Importance of an early finding

7. Results • What have consumers been doing? • Participants perceptions of consumer involvement • What difference does consumer involvement make? • Challenges • The way forward

8. What have consumers been doing? Integral part of study team Qualitative Community Matron Study Co-applicants for ethics Writing interview guide Data Analysis Co-authors of paper Publication next month Steering group members Multi-centre randomised controlled trial Medicines management programme Worked on a number of clinical genetics in primary care studies in a more ad hoc way Contributed to bid development for Research programme grant Presentations and workshops about consumer involvement to University Colleagues and Primary Care Research Networks

9. Members of consumer involvement steering group, Primary Care Trust Research and Development Strategy group Primary Care Research Network strategy group Member of an ethics committee Contributed to bid for £2million 5 year research Programme and now Steering group member Recruiting more consumers to advise on study Writing patient letters of invitation, study information leaflets for several studies

10. Various strategy groups Ethics committee Rapid response bid development Clinical Genetics in Primary Care research Ageing and Rehab research CORE GROUP CONSUMER RESEARCH ADVISORY GROUP Medicines Management research Injury Prevention research Consumer involvement Steering group Delivering training workshops

11. Participants perceptions • Researchers • Initial thoughts • Final views • Consumers • Initial thoughts • Final views

12. How does it make a difference? • Patient information • Wider views • Team work

13. Challenges • Time and Support • Finances • Roles • Personal stories

14. The way forward • Management – a coordinator • Pool of advisors • Finances

15. Training • Identifying what is needed • Working out the best way of doing training • What • When • Who

16. Importance of the GROUP • Purpose of the group • Group development • Forming • Storming • Norming • Performing

17. Support needed • For consumers • Within the group • Working in different research studies • For researchers • Working in different ways • For Project lead • Evaluation feedback an important element • As we change our remit and expand..

18. Thank you for listeningAny questions? Contact details jane.stewart@nottspct.nhs.uk