Public Engagement Symposium: Engaging Leeds

1. SEC3 2014 Engaging Leeds Welcome to the Public Engagement Symposium at SEC3 2014 Chaired by Alexa Ruppertsberg, FMH

2. SEC3 2014 Engaging Leeds Public Engagement Symposium Engaging Students: public engagement – where does it begin and end? Stella Cottrell Director for Lifelong Learning

3. SEC3 2014 Engaging Leeds Public Engagement Symposium Students as partners in the creation and delivery of outreach activities Dr Dave Lewis IMST, FBS d.i.lewis@leeds.ac.uk

4. SEC3 2014 Engaging Leeds Public Engagement Symposium Business and Community Engagement; In the Curriculum Dr Sarah Underwood Lecturer in EnterpriseDirector of Undergraduate Student Education (LUBS) Deputy Director of Leeds Enterprise Centre

5. SEC3 2014 Engaging Leeds What’s to discuss? • Why? • The broad range of engagement with the community across the curriculum • Example – LUBS2015 Volunteering & Enterprise • How can we foster these relationships? Dr Sarah Underwood, Public Engagement Symposium

6. SEC3 2014 Engaging Leeds Why? Dr Sarah Underwood, Public Engagement Symposium

7. SEC3 2014 Engaging Leeds How do we engage the community with the curriculum? • Guest lectures • Speaker series • Live case studies • Assessed projects • Student mentor • Breath of opportunity increases interest and helps to build stronger relationships Dr Sarah Underwood, Public Engagement Symposium

8. SEC3 2014 Engaging Leeds LUBS2015 Volunteering & Enterprise • Example of holistic engagement with a module • 10 credit, elective module, level 2, semester 2 • Businesses (O2, logistik, Pincent Masons) // Community Groups (Holbeck in Bloom, Growing Zone, Wye Beck Valley Pride) • Students understand and critique (CSR) corporate social responsibility policies • Design a project that meets the CSR agenda and serves the community group • Day of Action – with businesses! • Students reflect on project

9. SEC3 2014 Engaging Leeds Sustaining the relationship • Needs management and co-ordination • Should be seen as beneficial on all sides • Find ways to recognise, reward and sustain a lasting relationship… e.g. Enterprise Ambassadors Thank you for listening! Dr Sarah Underwood, Public Engagement Symposium

10. SEC3 2014 Engaging Leeds Public Engagement Symposium What’s to be gained from Patient Public Involvement (PPI) in the design and delivery of clinical research? Delia Muir Patient and Public Involvement (PPI) Officer Leeds Institute of Clinical Trials Research Dr Sue Pavitt Reader in Applied Health Sciences Leeds Institute of Health Sciences Dr Paul Hyde Clinical Lecturer Restorative Dentistry School of Dentistry

11. Overview • Aim • To understand how Patient Public Involvement (PPI ) can add value to clinical research • Objectives • Review the role for PPI in ensuring the research has patient benefit focus • Illustrate through a Leeds led dental clinical trial how PPI can contribute to improve: • The relevance of the research question • Study success – design, operation and delivery of clinical research • Advancement of scientific knowledge • Delivery of patient benefits

12. Context - why do we do Clinical Research? • Evaluate whether a new treatment or device can help people with a particular medical condition? • Determine what is the most effective treatment/ care for people with that condition • To allow medical professionals and patients to gain information about the benefits, side effects and medical uses of new treatments • Discover new ways to use existing therapies • e.g. using aspirin in patients recovering from strokes

13. What is Patient Public Involvement (PPI)?

14. What is Patient Public Involvement (PPI)? • Who are the PP in PPI? • By Public and Patient we mean: • Patients / potential patients • People who use health and social services • Carers (unpaid) • Family members • Disabled persons • Members of the public • Organisations that represent patients and public’s views • Individuals/groups that are affected by health or clinical issues

15. What is the I in PPI? • ‘An active partnership between the public and researchers in the research process…’ Research to,about or for the public Researchwithor bythe public IMPROVES PATIENT PUBLIC AWARENESS OF IMPORTANCE OF CLINICAL RESEARCH

16. PARTNERSHIP/ COLLABORATION Active collaboration between ‘professionals’ and lay people USER CONTROL Focus of power, initiative & decision making is with service users CONSULTATION Lay views used to inform decision-making Levels of Involvement ENGAGEMENT Education / Knowledge transfer to Public Increasing empowerment of PPI reps within the research process

17. Why should we do PPI?PPI ensures research has patient relevance and asks the right question

18. PPI in Designing a Research Study Questions asked in Designing a Clinical Study The Important 4th Question: What do patients think? Are we asking the right question to improve the health and quality of life for patients?

19. 1st choices among research priorities in survey of patients*Surgery - Knee replacement (35.8) Education and advice (20.9)Complementary therapy (6.0) Drugs (4.5) Injections in the knee (4.5) Physical therapy (3.0) No treatment at all (1.5) Miscellaneous other priorities (23.9) PPI and research priorities: Osteoarthritis of the knee * Tallon D, Chard J, Dieppe P.Relation between agendas of the research community and the research consumer. Lancet 2000; 355:2037-40.

20. 380 trials of drugs 29 trials of complementary therapies 24 trials of physiotherapy/exercise14 trials of education 13 trials of surgery Analysis of 460 randomised trials of treatments for osteoarthritis of the knee

21. Case Study 1: Getting the right research question(s) • Example from Oral Cancer • Oncologist & surgeon –focus 5-year survival at any cost • Patient– focus quality of life issues – function & disfigurement • Trial designed to address future patients needs - providing complete impact of treatment on survival and quality of life • Patient sees trial as important and more likely to participate

22. The impact of Patient Public Involvement on design, recruitment and operations ofClinical Trials

23. Case Study 2: PPI – Co-Designing a Denture trial to meet patient needs • Carol and Shirley helped work with the research team to help us understand how the loss of all their natural teeth has impacted on their life • How denture wearing affects daily activities like eating, talking and laughing • How poor fitting dentures can lower your self-esteem and be painful • We understood the importance of constructing a complete set of dentures for the patient and their confidence and being self-assured about their appearance and everyday activities in public – smiling & eating

24. Case Study 2: PPI – Impact on Participant Literature • IMPROVDENT – A clinical trial to improve the fit of dentures by testing two dental impression materials • Trial Literature Reviewed • Recommendations to make the Patient Information Leaflets more understandable • Improved Trial Operations • Trial is explained better – results in improved uptake • Timely ethics approval • Recruited participants on time

25. Case Study 2: PPI – Impact on Trial Design • PPI reps are integral members of the trial management group • Trial Design Reviewed • The PPI reps made recommendations for comparing the two denture sets accounting for how people wear their dentures • Ensured patient reported outcomes measured • Ensure qualitative research has informed guided questions • Improved Pragmatic Trial Design • Trial is more participation friendly • Improved Patient reported outcomes • Trial is more likely to yield meaningful data for tangible patient benefit

26. Case Study 2: PPI – Impact on Trial operations / logistics • PPI reps are integral members of the trial management group • Trial Operational input • Appointments available largely between 10am - 3pm • Accommodates travel to appointments on Senior Citizen Bus Pass • Improved Trial Operations • Trial is “user friendly” • Participants less inconvenienced • Few cancelled appointments • Recruitment to schedule

27. Better designed trials improve Recruitment & Retention RECRUITMENT2/3rds of trials fail to reach target and require expensive extensions Expensive extensions or Underpowered trials RETENTION 1/3rd enrolees drop out AWARENESS ADDITIONAL SUPPORT

28. Trial team know that the PPI has improved trial operations and design resulting in a tangible impact on trial recruitment: Faster ethics approval a timely trial opening Participant friendly trial keeps refusals to a minimum Maintains recruitment to schedule trial within budget Case Study 2: PPI – Impact on Trial recruitment & retention

29. In Summary - Benefits of PPI User involvement in clinical research is valuable and ensures: • Different perspectives heard • Fundable - Research priorities identified by patients deliver research that is relevant and likely to yield patient benefits • Outcomes important to users are measured • Improved research design • Improved study logistics • Access to patients - via peer networks • Access ‘hard-to-reach’ patient groups • Effective dissemination • Improved research that addresses: • Patient needs, • Achieves recruitment & retention to timeline • Delivers to target and within budget

30. Improved Health The Future - PPI central role in Clinical Research Improved Recruitment & Retention • Study designed to take account of patients needs • Study operations / logistics made patient friendly • Patient literature simplified • Ensuring informed consent & good enrolment to study Patient Benefit Improved Delivery of Clinical Research & Evidence-based Medicine

31. Any Questions? • Dr Sue Pavitt • Leeds Institute of Health Sciences • s.pavitt@leeds.ac.uk • +44 (0) 113 343 6985

32. SEC3 2014 Engaging Leeds Public Engagement Symposium How do you utilise the (unexpected) opportunity to communicate big-concept national research to a non-expert audience? Constanze Vageler School of Geography

33. SEC3 2014 Engaging Leeds Public Engagement Symposium Theatre in education outreach Carreen Dew Faculty of Medicine & Health