NIHR Public Involvement Leads’ National Meeting The Royal Society, London 25 th November 2016
Regional Representation • National 4 – NIHR 17 9 – Charity 5 5 7 10 7 9 17 3 8 Central Commissioning Facility & INVOLVE
Organisations Represented • 4 NIHR Biomedical Research Units • 1 NIHR Health Protection Research Units • 8 NIHR Biomedical Research Centres Newcastle • 1 NIHR Blood and Transplant Research Units • 2 NIHR Healthcare Technology Co-operatives • NIHR Diagnostic Evidence Co-operatives Leeds Bradford • 8 NIHR-supported Clinical Research Facilities Manchester • NIHR School for Public Health Research Sheffield • 2 NIHR School for Primary Care Research Nottingham Liverpool • 1 NIHR/CR-UK Experimental Cancer Medicine Centres Birmingham Cambridge • NIHR Surgical Reconstruction and Microbiology Research Centre • 9 NIHR Collaborations for Leadership in Applied Health Research Leicester and Care Oxford Bristol • 6 NIHR Coordinating Centres • 9 NIHR Clinical Research Networks London • 5 Charities Brighton Southampton • Wellcome Exeter Peninsula • 11 NHS Trusts • 9 NIHR Research Design Services • 4 Academic Health Science Networks Central Commissioning Facility & INVOLVE
Meeting purpose Update; national strategy for NIHR & Public Involvement, INVOLVE and work programmes supporting delivery of Going the Extra Mile Recommendations. Identify; the learning and development needs, career pathways, and skill sets of PI Leads Shape; NIHR Public Involvement Standards and indicators Network; with colleagues and support collaboration
NIHR and its partnership with the public NIHR PPI Leads Meeting, Royal Society, Friday 25 th November 2016 Simon Denegri, NIHR National Director for Patients and the Public in Research and Chair, INVOLVE Zoe Gray, Director, INVOLVE
Nature of public partnership is changing Past Present and future • Involvement • Co-production • The individual • The community • Clinical research • Health research • Process • Outcomes • Centrally controlled • Citizen driven • Partnership • Collaboration • The committee room • Digital, tech, social media • Patients, carers • Consumers • National focus • Global movement
NIHR ‘Going the Extra Mile’ 2015 -2025 Vision: A population actively involved in research to improve health and wellbeing for themselves, their family and neighbours. • It’s easy for people to be part of what we do • Patient, carer and public experience is valued • Public involvement = research excellence • National strategy is informed by local practice • Evidence of what works is actionable • We remain the global leader. • Reach, relevance and refinement
NIHR ‘Going the Extra Mile’ 2015 -2025 Key areas of work • Improving access to opportunities for people • Increasing the diversity of our community • Developing organisations standards • Supporting learning and development • Establishing a regional network • Defining and reporting impact • Collaboration and partnership • Co-production
Rewiring the house
INVOLVE new work programme National Leadership Areas: Resources, Tools & Guidance - Diversity & Inclusion • National enquiry service - Learning & Development • People in Research: matchmaking - Community, partnership, networks (Co- • Briefing notes for researchers/resources production, International PPI network) • Benefits advice service - Standards (with NIHR CCF) Regional Networks: - National – regional – local intelligence sharing & co-ordination - Beyond NIHR boundaries - Increasingly citizen led
Regional network
Constituency and reach
Developing an international network
Improving access to NHS research
Every willing patient a research patient www.ukctg.nihr.ac.uk
Grand challenges • Reach – reaching out diverse communities so our work better reflects the needs of the population • Relevance – following through on the priorities and needs identified by patients, carers and health professionals • Refinement – better models, better methods • Relationships – work and methods that reflect the changing expectations of the public
Final thoughts and thank you!
NIHR Strategic overview Chris Whitty and Louise Wood
Public Involvement Standards Development Partnership Philippa Yeeles and Paula Wray
Going the Extra Mile “Having reviewed the report's recommendations, I am content that the NIHR commits to taking them forward. This important work will be led by Simon [Denegri] with support provided by the INVOLVE Coordinating Centre. The NIHR community will work in partnership to deliver the recommendations of the report .” Response to ‘Going the Extra Mile’ Professor Dame Sally C Davies, Chief Medical Officer. Recommendation 2 – Culture: The NIHR should commission the development of a set of values, principles and standards for public involvement. These must be co-produced with the public and other partners. They should be framed in such a way, and with a clear set of self-assessment criteria, so that organisations across the NIHR see their adoption as integral to their continuous improvement in public involvement. The http://www.nihr.ac.uk/02 achievements of the public, staff and researchers in promoting and -documents/about- advancing public involvement should be celebrated and NIHR/NIHR- acknowledged by the NIHR. Publications/Extra%20 Mile2.pdf Central Commissioning Facility & INVOLVE
Building on firm foundations INVOLVE’s Public involvement in research: Values and principles framework • 2013, INVOLVE reviewed literature, publications and reports that looked at values, principles and standards for PPI in research • 2014, INVOLVE Advisory Group adapted findings from the review into a draft framework to identify and reflect on good practice • 2015, revised version of the framework to reflect extensive feedback from consultation. “It is intended that this framework is a living document that will continually evolve over time and be useful for reporting public involvement in research as well as for assessing the quality of involvement.” http://www.invo.org.uk/posttypepublication/public-involvement-in-researchvalues-and- principles-framework/ Central Commissioning Facility & INVOLVE
Natural Born Collaborators • Diagnostic Evidence Co-operative • Collaborations for Leadership in • Health Protection Research Unit • Newcastle Biomedical Research Centre Applied Health Research and • Newcastle Biomedical Research Unit Care Oxford • School for Primary Care Research • School for Public Health Research • Biomedical Research Centre London • Clinical Research Network • Cancer Biomedical Research Centre Coordinating Centre • Cardiovascular Healthcare Technology • Trainees Coordinating Centre • Patient Safety Translational Co-operative • Diagnostic Evidence Co-operative Research Centre • Great Ormond Street Biomedical • Mindtech Healthcare Technology Co-operative Research Centre • NIHR Office for Clinical Research • National Horizon Scanning Research and Intelligence Centre Infrastructure • Central Commissioning Facility • Surgical Reconstruction and • Clinical Research Facilities for Microbiology Research Centre • Collaborations for Leadership in Experimental Medicine • INVOLVE Applied Health Research and Care • NIHR Evaluations, Trials and Studies West Midlands • Cardiovascular Biomedical Coordinating Centre • Research Design Service South East Research Unit • Health Protection Research Unit Medical Research Council Health Research Authority Royal College of Nursing Research Institute Bliss / Voluntary Sector Shared Learning Group Central Commissioning Facility & INVOLVE
Standards Development Partnership NIHR and Health and Care Research Wales (HCRW) are working jointly to develop a set of public involvement standards. This work is being delivered by a public involvement Standards Development Partnership. The standards are building on existing examples, experience and good practice from Scotland and Northern Ireland (our ‘pathfinders’) and we are working with the devolved nations and Ireland. A draft set of six core standards have been drafted and we are starting the wider dialogue, here today, to support their development and implementation. Central Commissioning Facility & INVOLVE
Thank you Website: www.involve.nihr.ac.uk Email: involve@nihr.ac.uk Twitter: @NIHRINVOLVE
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