1. Designing a culturally appropriate self-management intervention for primary breast cancer patients from different ethnic groups using ‘Experience Based Co-Design’ (EBCD) Dr Julie Wray, Chair, Service User Research Partnership (SURP) Diana Jupp, Director of Services

2. Acknowledgments Chief Investigator: Karen Scanlon - Head of Research & Evaluation, Breast Cancer Care Co-authors: Drs Charlotte Tompkins and Judith Offman - researchers, Breast Cancer Care Catherine Dale - Programme Manager Patient Centred Care, Guys & St Thomas’s NHS Trust Dr Jo Armes - King’s College London Chrissie Hepworth and Dr Julie Wray Service User Research Partnership, Breast Cancer Care Professors Emma Ream and Seeromanie Harding - King’s College London London and South Services team, Breast Cancer Care Research participants Staff and stakeholders The Big Lottery Fund for funding this project

3. UK wide support and information

4. Moving Forward Courses Improving the wellbeing of breast cancer survivors (4 yrs) Aim: to examine the needs of breast cancer survivors from diverse ethnic and socio-economic backgrounds and develop and test an intervention to address these needs.

5. Overall research aims To understand the needs (phase 1) To understand the barriers and type of intervention needed (phase 2) To design, develop and evaluate an intervention to address these needs and overcome barriers (phase 3)

6. The research so far… Phase One 66 qualitative interviews with women across England from different minority ethnic and socio- economic groups Findings: –Lack of knowledge and awareness about breast cancer, –stigma and fear of cancer –Social isolation –unmet emotional needs after treatment

7. Phase 1 Outcome: Uncertainty about type of support intervention required Which ‘need’ to target? Participants raised many different ideas about type of intervention(s) required Systematic Review - Q. Can we culturally adapt an intervention that already exists? We needed patients and experts to help co-design our intervention

8. Phase 2: Experience based co-design (EBCD) method A staged participatory research approach which seeks to capture and understand how people experience a service to improve future experiences. We used an accelerated approach Gather experiences from patients and staff through interviews, observation and group discussions Identify key 'touch points' (emotionally significant points) Create a short edited film is from the patient interviews Show film to staff/ stakeholders and patients, conveying patient experiences Bring staff / stakeholders and patients together to work in groups to identify and design activities to improve the service/ experience

9. “ Patient Events” Separate films for Black and South Asian groups were made to highlight their unique experiences

10. Break out discussion groups facilitated by a member of Breast Cancer Care staff

11. Joint staff and patient events held at library in Peckham

12. Prowess is launched! Patient P romoting R ec O very W ellbeing E quality and S upport in breast cancer S urvivors

13. Our experience of EBCD method Engagement & participation which produces collective co-design and ‘mobilised’ group Can engage ‘hard to reach’/ ‘seldom heard’ Meaningful contribution and people feel valued Films - get people talking! Provided the opportunity to meet/ influence people may not have had opportunity to meet before

14. Our learnings: Provide tailored information: finance and employment rights and benefits and on skin and hair care for black and Asian women Use interactive & visual delivery methods: less emphasis on traditional teaching Promote social interaction with others: to help nurture and build peer support with others Use expert & lay facilitators: representing different ethnic communities and volunteer role models Involve family: to inform them and to address their information and support needs Be inclusive rather then exclusive

15. Next steps: PROWESS Feasibility trial (2014- 15) with embedded process evaluation Expected outcomes –Adapt our current services model –Work with partners in delivering the model or –Share our learnings and train others to deliver the PROWESS intervention

16. Thank you! diana.jupp@breastcancercare.org j.wray@salford.ac.uk www.breastcancercare.org.uk