SEC Engaging Leeds Welcome to the Public Engagement Symposium at SEC Chaired by Alexa Ruppertsberg, FMH

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

SEC Engaging Leeds Students as partners in the creation and delivery of outreach activities Public Engagement Symposium Dr Dave Lewis IMST, FBS

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

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

SEC Engaging Leeds Dr Sarah Underwood, Public Engagement Symposium Engagement with local businesses, organisations and community groups Break down barriers and build relationships by bringing into university Realistic and relevant discussion in the curriculum Enhanced student experience Opportunities for externals to benefit from University knowledge Why?

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

SEC Engaging Leeds 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 LUBS2015 Volunteering & Enterprise

SEC Engaging Leeds 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 Sustaining the relationship Dr Sarah Underwood, Public Engagement Symposium Thank you for listening!

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

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

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

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

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

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

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

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

1 st 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) * Tallon D, Chard J, Dieppe P. Relation between agendas of the research community and the research consumer. Lancet 2000; 355: PPI and research priorities: Osteoarthritis of the knee

380 trials of drugs 29 trials of complementary therapies 24 trials of physiotherapy/exercise 14 trials of education 13 trials of surgery Analysis of 460 randomised trials of treatments for osteoarthritis of the knee

Case Study 1: Getting the right research question(s)  Example from Oral Cancer Oncologist & surgeon – focus 5-year survival at any cost  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 Patient – focus quality of life issues – function & disfigurement

The impact of Patient Public Involvement on design, recruitment and operations of Clinical Trials

 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 Case Study 2: PPI – Co-Designing a Denture trial to meet patient needs

Case Study 2: PPI – Impact on Participant Literature 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 IMPROVDENT – A clinical trial to improve the fit of dentures by testing two dental impression materials

Case Study 2: PPI – Impact on Trial Design 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 PPI reps are integral members of the trial management group

Case Study 2: PPI – Impact on Trial operations / logistics 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 PPI reps are integral members of the trial management group

AWARENESSADDITIONAL SUPPORT Better designed trials improve Recruitment & Retention RECRUITMENT 2/3rds of trials fail to reach target and require expensive extensions RETENTION 1/3 rd enrolees drop out Expensive extensions or Underpowered trials

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

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

The Future - PPI central role in Clinical Research Improved Health  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 Recruitment & Retention Improved Delivery of Clinical Research & Evidence-based Medicine

Any Questions? Dr Sue Pavitt Leeds Institute of Health Sciences +44 (0)

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

SEC Engaging Leeds Theatre in education outreach Public Engagement Symposium Carreen Dew Faculty of Medicine & Health