Leads National Meeting The Royal Society, London 25 th November 2016 - - PowerPoint PPT Presentation

25th November 2016 The Royal Society, London

NIHR Public Involvement Leads’ National Meeting

Central Commissioning Facility & INVOLVE 4 5 9 7 7 10 9 17 3 8

Regional Representation

• National

– NIHR 17 – Charity 5

Central Commissioning Facility & INVOLVE

Newcastle Leeds Leicester

Peninsula

Bradford Manchester Sheffield Liverpool Nottingham Birmingham Oxford Cambridge London Bristol Brighton Southampton Exeter

Organisations Represented

• 4 NIHR Biomedical Research Units
• 1 NIHR Health Protection Research Units
• 8 NIHR Biomedical Research Centres
• 1 NIHR Blood and Transplant Research Units
• 2 NIHR Healthcare Technology Co-operatives
• NIHR Diagnostic Evidence Co-operatives
• 8 NIHR-supported Clinical Research Facilities
• NIHR School for Public Health Research
• 2 NIHR School for Primary Care Research
• 1 NIHR/CR-UK Experimental Cancer Medicine Centres
• NIHR Surgical Reconstruction and Microbiology Research Centre
• 9 NIHR Collaborations for Leadership in Applied Health Research

and Care

• 6 NIHR Coordinating Centres
• 9 NIHR Clinical Research Networks
• 5 Charities
• Wellcome
• 11 NHS Trusts
• 9 NIHR Research Design Services
• 4 Academic Health Science Networks

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 25th 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

• Involvement
• The individual
• Clinical research
• Process
• Centrally controlled
• Partnership
• The committee room
• Patients, carers
• National focus

Present and future

• Co-production
• The community
• Health research
• Outcomes
• Citizen driven
• Collaboration
• Digital, tech, social media
• Consumers
• 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:

• Diversity & Inclusion
• Learning & Development
• Community, partnership, networks (Co-

production, International PPI network)

• Standards (with NIHR CCF)

Regional Networks:

• National – regional – local intelligence

sharing & co-ordination

• Beyond NIHR boundaries
• Increasingly citizen led

Resources, Tools & Guidance

• National enquiry service
• People in Research: matchmaking
• Briefing notes for researchers/resources
• Benefits advice service

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
• ur 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

Central Commissioning Facility & INVOLVE

Going the Extra Mile

http://www.nihr.ac.uk/02

• documents/about-

NIHR/NIHR- Publications/Extra%20 Mile2.pdf

“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
• ther 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 achievements of the public, staff and researchers in promoting and advancing public involvement should be celebrated and acknowledged by the NIHR.

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

Medical Research Council Health Research Authority Royal College of Nursing Research Institute Bliss / Voluntary Sector Shared Learning Group

• Diagnostic Evidence Co-operative
• Health Protection Research Unit
• Newcastle Biomedical Research Centre
• Newcastle Biomedical Research Unit
• School for Public Health Research
• Clinical Research Network

Coordinating Centre

• Trainees Coordinating Centre
• Patient Safety Translational

Research Centre

• Mindtech Healthcare Technology

Co-operative

• National Horizon Scanning

Research and Intelligence Centre

• Surgical Reconstruction and

Microbiology Research Centre

• Collaborations for Leadership in

Applied Health Research and Care West Midlands

• Cardiovascular Biomedical

Research Unit

• Health Protection Research Unit
• Collaborations for Leadership in

Applied Health Research and Care Oxford

• School for Primary Care Research
• Biomedical Research Centre London
• Cancer Biomedical Research Centre
• Cardiovascular Healthcare Technology

Co-operative

• Diagnostic Evidence Co-operative
• Great Ormond Street Biomedical

Research Centre

• NIHR Office for Clinical Research

Infrastructure

• Central Commissioning Facility
• Clinical Research Facilities for

Experimental Medicine

• INVOLVE
• NIHR Evaluations, Trials and Studies

Coordinating Centre

• Research Design Service South East

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.

Thank you

Website: www.involve.nihr.ac.uk Email: involve@nihr.ac.uk Twitter: @NIHRINVOLVE