NIHR/INVOLVE Public Involvement Leads Meeting

Kings Fund, London, July 22nd, 2014

Simon Denegri, Chair, INVOLVE; NIHR National Director for Patients and the Public

How do we create the future?

Themes for the day

• Leadership• Collaboration• Networking• Shared learning and support• Cohesion, consistency and continuity

What does ‘One NIHR’ look like for PPI?

What does ‘One NIHR’ look like for PPI?

‘Coming together is a beginning, staying together is progress, and working together

is success.’

Henry Ford

NIHR ‘Breaking Boundaries’ Review of Public Involvement

Simon Denegri, Chair, INVOLVE; NIHR National Director for Patients and the Public

Rachel Matthews, Review Adviser; PPI Theme Lead, CLAHRC NWL

What is the ‘Breaking Boundaries’ review?

• A strategic review to examine future options in building an active collaboration with the public and making best use of their skills, knowledge and experience.

• Aims to build on achievements in public involvement to help deliver future ambitions for research and a healthier nation

• It will shape tone, style and approach to public involvement across the NIHR over the next 10 years.

Five areas of inquiry

1. Overall evaluation of progress to date2. Barriers to public involvement3. How we can do things differently4. Future design and delivery 5. What will success look like

Review will report in the autumn ahead of the INVOLVE Conference, Birmingham, 26/7 November 2014

The response

1. Individuals – 500 plus, most from patients, public, service users

2. Organisations – 80 plus and a few more coming in

3. Collaborative – regional, institutional, functional

4. Oral evidence – evidence session with intl guests, charities and industry

5. Local discussions – RAPPORT , NWPiRF

Nuffield Dept Primary Care Health Sciences, University of OxfordLeeds Teaching Hospitals BRC and CRFFaculty of Health and Applied Sciences (HAS) - Uni. of the West of EnglandNIHR Clinical Research Network Wellcome Trust Clinical Research Facility, University of EdinburghRDS South CentralSouth Yorkshire PPI Strategy Group NIHR Birmingham Liver Biomedical Research Unit (BRU)NIGR Nottingham Hearing Biomedical Research UnitInvolvement in Research & Development, Berkshire Healthcare Foundation TrustDepartment of Health Sciences PPI Committee, University of YorkService Users in Research Advisory Group, via CRN: Mental HealthUniversities of Kent, Hertfordshire, East Anglia and Warwick / RCN Research InstituteHCAI Research NetworkNIHR CRN: Children/PPI Manager for NIHR Alder Hey CRFNHS R&D Forum Service user and carer sub group.Centre for Research in Primary & Community Care, Uni of Hertfordshire, HatfieldOne Research Ltd, Sussex Innovation Centre, Science Park Sq. Uni of Sussex, BrightonLeeds Institute for Clinical Trials ResearchClinical Research Network: Mental HealthSocial Care Institute for Excellence Marie Curie Cancer CareThe McPin Foundation (www.mcpin.org)NIHR CLAHRC East MidlandsNIHR CRN SWPMRC HTMR NetworkCentral Manchester NHS TrustClinical Research Network West of EnglandNottingham University Hospitals NHS TrustLeeds Metropolitan UniversityClinical Research Network - Mental HealthClinical Research Network - Mental HealthUniversity of Liverpool NIHR Biomed. Research Unit on Lewy Body Dementia / Centre on Ageing & Chronic IllnessResearch Institute for Primary Care and Health Sciences, Keele University

Biomedical Research Centre & Research Directorate, Uni. College London HospitalsUniversity of Manchester / Central Manchester Universities NHS Fdn TrustClinical Research Office, Sheffield Teaching Hospitals & University of SheffieldNIHR Devices for Dignity Healthcare Technology Co-operativeUniversity of SalfordUnited Kingdom Clinical Research Facility (UKCRF) NetworkUniversity of LeedsPenCLAHRCNIHR / Wellcome Trust Clinical Research Facility, Cambridge University HospitalNIHR Research Design Service West MidlandsNorthumbria UniversityNorthumbria UniversityNational Institute for Health and Care Excellence (NICE)Cancer Research UKUniversity College London Hospitals DECIPHer. UKCRC Public Health Research Centre of Excellence- Cardiff, Bristol & Swansea Uni'sBarts Health NHS TrustNIHR Imperial Biomedical Research Centre (BRC) & Patient Experience Research Centre (PERC)Asthma UKCRN West MidlandsPRIMER – the PPI group for the Centre for Primary Care, University of ManchesterHealth Research Authority North Bristol NHS TrustNIHR Trainees Coordinating Centre (TCC)NETSCCBritish Heart Foundation (BHF)Association of Medical Research CharitiesINVOLVE Coordinating CentreCLAHRC East of EnglandCRN Central responseCicely Saunders Institute, King's College, London

Theme 1: Overall evaluation of progress to date

• Progress has been made but not consistently across NIHR

• Research is becoming more relevant to patients and carers

• Greater potential for implementation of research evidence

• Evidence of transformative nature of public involvement personally and professionally

Theme 2: What stops public involvement?

• Attitudes - scepticism, mistrust, lack of awareness, communication and curiosity

• Resources – time, money, infrastructure to meet increased demand, inconsistent reward and reimbursement policies, procedures and practices across NIHR, NHS, Higher Education and voluntary sector

• Training and support – inconsistent opportunities• Confusing and inconsistent expectations from different parts

of NIHR combined with variable performance and limited evidence of effective practice and impact

• Leadership - more leaders to promote and practice public involvement

Theme 3: Doing public involvement differently

• Practice - Increase critical practice – more publication on ‘how’, introduce standards

• Promotion- Better promotion of effective involvement, more outreach

• Learn from other sectors and disciplines• Only fund studies and programmes where there is

confidence about the standard of public involvement• Inclusive – more reflective of wider society

Theme 4: How do we do it? The future design and delivery of public involvement in NIHR

• Coordinate and collaborate – better strategic development

• Better models of collaboration between lay people and researchers

• Strategic and systematic approach to the collection of evidence across NIHR

Theme 5: Where should we be with public involvement in NIHR in ten years?

• Public involvement is normal and accepted practice• Enhanced evidence base with better consensus on

value of public involvement• Agreed methods and indicators of impact• Greater public awareness of research and NIHR• Global leadership in scholarship and the study of

public involvement in research

Learning from other sectors and disciplines• Third sector

• Private sector – ‘club cards’• Urban planning – citizen science• Sense about science – Ben Goldacre• Education – School governor model• Technology and digital sector – Future gov

Is there a question you would have liked us to ask?

• What should we ensure isn’t lost in thinking differently about public involvement in research?

• The development and use of experiential knowledge in research, rather than were members of the public in the room at a research meeting

• What are the top three priorities to ensure success?

What next?

• Review panel currently reflecting on evidence• Panel meets again in September and October• Ongoing testing of ideas i.e. tweetchats• Report and recommendations to be published

ahead of INVOLVE conference: 26/7 November

With thanks to CLAHRC NWL for their expert support

ppi.review@nihr.ac.uk