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INVOLVE: learning from 21
years at the helm of public
involvement
Copenhagen
2nd March 2017
Zoë Gray, Director of INVOLVE
@NIHRINVOLVE
www.involve.nihr.ac.uk
Talking about….
1. Lets understand each other: the terminology of involvement
2. Introducing INVOLVE
3. What's the value of involving patients and the public in research –
why do it?
4. Learning the lessons: what works in public involvement (what
doesn’t work)?
5. Emerging innovations and opportunities
www.involve.nihr.ac.uk
1. What is involvement?
Involvement true partnership between
researchers, public and others (‘with’ and
‘by’); increasing quality, relevance to
improve health and wellbeing of the
population.
Engagement is hearing or being informed
about a project, service change etc.
Participation is having the research,
service redesign etc. done to you.
Who are the public?
Acroynms!
www.involve.nihr.ac.uk
1. Involvement, Engagement,
Participation
www.involve.nihr.ac.uk
2. INVOLVE today
INVOLVE
EXECUTIVE
GROUP
Director + partner Director
leads + Advisory Gp
members
(inc. new partnership RDS)
INVOLVE
ADVISORY
GROUP
Appointed lay
members - 16
INVOLVE
EMPLOYEES
(9 inc. partner
secondment)
INVOLVE
Core team:
Delivers day to
day work &
partnership
Oversight of delivery
through Director to the
Department of Health
2 new public Advisory
Group members 2017
Advises on strategy and
work programmes,
especially public
involvement approaches -
4 new members 2017
www.involve.nihr.ac.uk
2. Influence of Public and Patients
throughout INVOLVE’s work
2. INVOLVE Journey
www.involve.nihr.ac.uk
2. Public involvement vision to 2025
“Going the Extra Mile”
Vision
“A population actively involved in
research to improve health and
wellbeing for themselves, their
family and their communities”
11 Recommendations
www.involve.nihr.ac.uk
2. Positioning of INVOLVE: NIHR
www.involve.nihr.ac.uk
2. Positioning – UK &
International
• UK: Devolved nations collaborations
• International: informal knowledge transfer through to
joint projects and consultancy
2. INVOLVE current focus
National Leadership Areas:
- Diversity & Inclusion
- Learning & Development
- Community, partnership, networks (Co-
production, International PPI network)
Regional Networks:
- National – regional – local intelligence
sharing & co-ordination
- Beyond NIHR boundaries
- Increasingly citizen led
Standards, Guidance,Tools
• PPI standards for self assessment
• National enquiry service
• People in Research: matchmaking
• Briefing notes for researchers
• Benefits advice service
Going the Extra Mile: Community, Co-ordination, Connectivity, Culture
www.involve.nihr.ac.uk
3. What’s the value, why do it?
www.involve.nihr.ac.uk
3. What’s the value, why do it? Improving
Research relevance
James Lind Alliance Priority
Setting Partnerships (PSPs)
• 43 completed PSPs -including
alcohol-related liver disease,
womb cancer and autism
• 36 active PSPs - Type 2
Diabetes, Emergency
Medicine, and people with
multiple conditions in old age
http://www.jla.nihr.ac.uk/making-a-
difference/funded-research.htm
3. What’s the value, why do it?
Improving research design
www.involve.nihr.ac.uk
3. What’s the value, why do it?
Improving research effectiveness
‘The aim of patient and public
involvement
is to improve the quality,
feasibility and translational
value of research...[This] is the
first time
we can see that patient
involvement is linked to higher
likelihood of reaching
recruitment target – and as a
result, study success.’
ProfessorTilWykes, Director, MHRN
‘Patient involvement in research boosts
success,’ The Guardian, 16/09/13
Paper reference: Ennis, L. et al.‘Impact of
patient involvement
in mental health research: longitudinal study’
British
Journal of Psychiatry
(Sept 2013) doi: 10.1192/bjp.bp.112.119818
www.involve.nihr.ac.uk
3. Example 1: AQUA-Trial
www.involve.nihr.ac.uk
3. Example 2: ProtecT Prostate Cancer
Trial
• 10 year trial funded by NIHR, reported in 2016
• Evaluating the effectiveness, cost effectiveness
and acceptability of the major treatment options
for men with localised cancer of the prostate:
surgery (radical prostatectemy), radiotherapy or
“watchful waiting”
• Patient interpretation of “watchful waiting” :
“watch while I die”
• PPI increased recruitment rates from 40 – 70%
www.involve.nihr.ac.uk
4. Learning the lessons:
what works?
www.involve.nihr.ac.uk
4. Learning the lessons:
what works?
Strong Voice
Weak Voice
Single
Interaction
Multiple Interactions
Organisational
Concerns
Public
Concerns
ChangeConservation Organisation
Adapted from Gibson et al., 2012
www.involve.nihr.ac.uk
5. Emerging innovations &
opportunities
5. Emerging innovation and
opportunities
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
Research + public insight + data + technology = ?
22
Thank you
Website: www.involve.nihr.ac.uk
Email: involve@nihr.ac.uk
Twitter: @NIHRINVOLVE
zoe.gray@nihr.ac.uk
www.involve.nihr.ac.uk
A Negative Cycle
Little
knowledge of
what the public
perspective
can bring
Reluctant
involvement
with
inadequate
resource
Little or no
support for
public involved
Limited
contribution
Confirmation
that public
voice is of little
value.
www.involve.nihr.ac.uk
The Positive Cycle
Confident
of what the
public
perspective
can bring
Support to
involve with
sufficient
resource
Public
involved
supported
and valued
Significant
contribution
Improved
quality of
the
research
“We were able to
recruit above our
target within the
same budget and
timescales, across
all sites.”
“We would never
have recruited that
number of
participants without
the public
contributions.”
www.involve.nihr.ac.uk
Going the Extra Mile
 NIHR strategic direction for next 10 years
 Improve quality and consistency
 Strategic leadership shared responsibility
 Impacts
www.involve.nihr.ac.uk
Vision – One NIHR
11 Recommendations:
Communication and Information
Culture
Continuous Improvement
Co-production
Connectivity
Co-ordination
Community
www.involve.nihr.ac.uk
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
www.involve.nihr.ac.uk
Public Involvement Standards
NIHR INVOLVE and Central Commissioning Facility are leading on the
standards development in partnership with Health and Care Research
Wales.
 Inclusive Opportunities
 Working Together
 Support and Learning
 Communications
 Impact
 Governance
What has the public ever done for
UK health research?
• A passion and commitment to be
‘part of it’ - public involvement,
citizen science, co-production
• Funding and volunteering which
has created a world-beating
medical research charity sector >
£1Billion per annum
• Public support for the cutting
edge– hybrid embryo, stem cell
research, genomics
• Altruism leading to research
participation by millions of people
over the last decade
Constituency and reach
www.involve.nihr.ac.uk
3. What’s the value, why do
it?
• Funding and volunteering which has enabled us to grow a
world-beating medical research charity sector > £1Billion
• Public support for cutting edge medical research – hybrid
embryo,stem cell research.
• Altruism leading to research participation by millions of
people
• A passion and commitment to be ‘part of it’ meaning we are ahead
of other countries people in research design and delivery – public
involvement,citizen science,co-production
What have the UK public ever done for health
research?
www.involve.nihr.ac.uk
• Examples of public involvement
• as joint grant holders or co-
• applicants on a research project
• involvement in identifying research priorities
• as members of a project advisory or steering group
• commenting and developing patient information leaflets or other
research materials
• undertaking interviews with
• research participants
• user and/or carer researchers carrying out the research.
Improving access to research

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Zoë Gray: INVOLVE: Learning from 21 years at the helm of public involvement

  • 1. INVOLVE: learning from 21 years at the helm of public involvement Copenhagen 2nd March 2017 Zoë Gray, Director of INVOLVE @NIHRINVOLVE
  • 2. www.involve.nihr.ac.uk Talking about…. 1. Lets understand each other: the terminology of involvement 2. Introducing INVOLVE 3. What's the value of involving patients and the public in research – why do it? 4. Learning the lessons: what works in public involvement (what doesn’t work)? 5. Emerging innovations and opportunities
  • 3. www.involve.nihr.ac.uk 1. What is involvement? Involvement true partnership between researchers, public and others (‘with’ and ‘by’); increasing quality, relevance to improve health and wellbeing of the population. Engagement is hearing or being informed about a project, service change etc. Participation is having the research, service redesign etc. done to you. Who are the public? Acroynms!
  • 5. www.involve.nihr.ac.uk 2. INVOLVE today INVOLVE EXECUTIVE GROUP Director + partner Director leads + Advisory Gp members (inc. new partnership RDS) INVOLVE ADVISORY GROUP Appointed lay members - 16 INVOLVE EMPLOYEES (9 inc. partner secondment) INVOLVE Core team: Delivers day to day work & partnership Oversight of delivery through Director to the Department of Health 2 new public Advisory Group members 2017 Advises on strategy and work programmes, especially public involvement approaches - 4 new members 2017
  • 6. www.involve.nihr.ac.uk 2. Influence of Public and Patients throughout INVOLVE’s work
  • 8. www.involve.nihr.ac.uk 2. Public involvement vision to 2025 “Going the Extra Mile” Vision “A population actively involved in research to improve health and wellbeing for themselves, their family and their communities” 11 Recommendations
  • 10. www.involve.nihr.ac.uk 2. Positioning – UK & International • UK: Devolved nations collaborations • International: informal knowledge transfer through to joint projects and consultancy
  • 11. 2. INVOLVE current focus National Leadership Areas: - Diversity & Inclusion - Learning & Development - Community, partnership, networks (Co- production, International PPI network) Regional Networks: - National – regional – local intelligence sharing & co-ordination - Beyond NIHR boundaries - Increasingly citizen led Standards, Guidance,Tools • PPI standards for self assessment • National enquiry service • People in Research: matchmaking • Briefing notes for researchers • Benefits advice service Going the Extra Mile: Community, Co-ordination, Connectivity, Culture
  • 13. www.involve.nihr.ac.uk 3. What’s the value, why do it? Improving Research relevance James Lind Alliance Priority Setting Partnerships (PSPs) • 43 completed PSPs -including alcohol-related liver disease, womb cancer and autism • 36 active PSPs - Type 2 Diabetes, Emergency Medicine, and people with multiple conditions in old age http://www.jla.nihr.ac.uk/making-a- difference/funded-research.htm
  • 14. 3. What’s the value, why do it? Improving research design
  • 15. www.involve.nihr.ac.uk 3. What’s the value, why do it? Improving research effectiveness ‘The aim of patient and public involvement is to improve the quality, feasibility and translational value of research...[This] is the first time we can see that patient involvement is linked to higher likelihood of reaching recruitment target – and as a result, study success.’ ProfessorTilWykes, Director, MHRN ‘Patient involvement in research boosts success,’ The Guardian, 16/09/13 Paper reference: Ennis, L. et al.‘Impact of patient involvement in mental health research: longitudinal study’ British Journal of Psychiatry (Sept 2013) doi: 10.1192/bjp.bp.112.119818
  • 17. www.involve.nihr.ac.uk 3. Example 2: ProtecT Prostate Cancer Trial • 10 year trial funded by NIHR, reported in 2016 • Evaluating the effectiveness, cost effectiveness and acceptability of the major treatment options for men with localised cancer of the prostate: surgery (radical prostatectemy), radiotherapy or “watchful waiting” • Patient interpretation of “watchful waiting” : “watch while I die” • PPI increased recruitment rates from 40 – 70%
  • 19. www.involve.nihr.ac.uk 4. Learning the lessons: what works? Strong Voice Weak Voice Single Interaction Multiple Interactions Organisational Concerns Public Concerns ChangeConservation Organisation Adapted from Gibson et al., 2012
  • 21. 5. Emerging innovation and opportunities 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
  • 22. Research + public insight + data + technology = ? 22
  • 23. Thank you Website: www.involve.nihr.ac.uk Email: involve@nihr.ac.uk Twitter: @NIHRINVOLVE zoe.gray@nihr.ac.uk
  • 24. www.involve.nihr.ac.uk A Negative Cycle Little knowledge of what the public perspective can bring Reluctant involvement with inadequate resource Little or no support for public involved Limited contribution Confirmation that public voice is of little value.
  • 25. www.involve.nihr.ac.uk The Positive Cycle Confident of what the public perspective can bring Support to involve with sufficient resource Public involved supported and valued Significant contribution Improved quality of the research “We were able to recruit above our target within the same budget and timescales, across all sites.” “We would never have recruited that number of participants without the public contributions.”
  • 26. www.involve.nihr.ac.uk Going the Extra Mile  NIHR strategic direction for next 10 years  Improve quality and consistency  Strategic leadership shared responsibility  Impacts
  • 27. www.involve.nihr.ac.uk Vision – One NIHR 11 Recommendations: Communication and Information Culture Continuous Improvement Co-production Connectivity Co-ordination Community
  • 28. www.involve.nihr.ac.uk 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
  • 29. www.involve.nihr.ac.uk Public Involvement Standards NIHR INVOLVE and Central Commissioning Facility are leading on the standards development in partnership with Health and Care Research Wales.  Inclusive Opportunities  Working Together  Support and Learning  Communications  Impact  Governance
  • 30. What has the public ever done for UK health research? • A passion and commitment to be ‘part of it’ - public involvement, citizen science, co-production • Funding and volunteering which has created a world-beating medical research charity sector > £1Billion per annum • Public support for the cutting edge– hybrid embryo, stem cell research, genomics • Altruism leading to research participation by millions of people over the last decade
  • 32. www.involve.nihr.ac.uk 3. What’s the value, why do it? • Funding and volunteering which has enabled us to grow a world-beating medical research charity sector > £1Billion • Public support for cutting edge medical research – hybrid embryo,stem cell research. • Altruism leading to research participation by millions of people • A passion and commitment to be ‘part of it’ meaning we are ahead of other countries people in research design and delivery – public involvement,citizen science,co-production What have the UK public ever done for health research?
  • 33. www.involve.nihr.ac.uk • Examples of public involvement • as joint grant holders or co- • applicants on a research project • involvement in identifying research priorities • as members of a project advisory or steering group • commenting and developing patient information leaflets or other research materials • undertaking interviews with • research participants • user and/or carer researchers carrying out the research.