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Breaking Boundaries 
#INVOLVE 2014, Birmingham 
Simon Denegri 
Chair, INVOLVE 
NIHR National Director for Public Participation 
and Engagement in Research
‘Coming together is a beginning, staying 
together is progress, and working together is 
success.’ 
Henry Ford
Public involvement in NIHR research in 2025 #BreakingBoundaries #INVOLVE2014
Improving health by doing research a 
better way
A joint venture 
Improving health is our first concern 
Knowledge is valued 
Partnership is equal
What you told us about PPI in 2014 
• The value of working with the public, and the 
difference it makes to the quality of research 
• Inconsistencies in practice and implementation 
across NIHR and other funders 
• Barriers to the public contributing to research 
including awareness, attitudes and support 
• The importance of partnership and collaboration 
to future success 
• The need to recognise and share good practice.
Your future priorities #PPI2025 
• Greater public awareness of research and the NIHR’s 
role in making it happen 
• Actionable evidence of the value of public involvement 
• Locally relevant but strategically consistent 
implementation 
• Clarity over quality and good practice in public 
involvement 
• Agreed measures for how public involvement is making 
a difference 
• Global partnership and better links with the NHS and 
other funders.
‘Public involvement [should] be so embedded in the 
culture of NIHR that new staff or new researchers 
coming into the field would naturally take on the 
values and practices of effective public 
involvement.’ 
‘Our vision for PPI in research in ten years’ time is 
that of ...a vast increase in the number of people 
who know about PPI and have taken part in some 
way in local research.’
Common goals 
• Opportunities to engage and become involved in research 
are visible and seized by the public. 
• It is standard practice for the public, researchers and health 
professionals to work together with confidence and success. 
• The experience of patients, service users and carers is a 
fundamental and valued source of knowledge. 
• Public involvement is a required part of high quality 
research researchers and their institutions. 
• Evidence of what works is easily available and can be put 
into practice. 
• The NIHR has maintained its global presence and influence 
for working in partnership with the public
‘One NIHR’ 
‘Real progress in PPI will not be achieved without an 
effective mechanism for coordinating PPI efforts across the 
now many NIHR bodies that have a role in developing, 
fostering, or implementing PPI…..’
Keeping it simple 
‘………..it gets complicated, confusing and messy. People 
need to know what is out there, how they can get involved 
and why it's happening. The acronyms, that then need to 
be spelt out and explained along with the many avenues 
an opportunity comes from, suddenly gets too difficult to 
decipher unless you’re an academic or a clinician.’
Locally driven, strategically consistent 
‘There is far too much duplication, working in silos and re-inventing 
the wheel. We need to free ourselves up to 
enable more time and resources for innovation and 
creativity. ‘ 
‘Perhaps regional networks, such as the CLAHRCs and 
AHSNs can be instrumental in providing a coordinated, 
clear single message to the public. They could also act as 
single point of contacts to their communities for all PPI 
opportunities in their regions ….simplifying access and 
reducing confusion for the public.’
Quality 
‘What is required now is a national framework 
which sets minimum standards for PPI quality, 
against which funding and ethical approval 
decision making can be made.’
Measuring success 
Reach 
Relevance 
Refinement
Topics for discussion 
#INVOLVE 2014 
What would need to be in place locally and 
regionally for you to work collaboratively to deliver 
NIHR’s strategic goals for public involvement? 
What should be our top three priorities to ensure 
success?
Questions 
Simon.Denegri@nihr.ac.uk 
Twitter: @SDenegri 
Blog: http://simondenegri.com/ 
Thank you to the review panel and CLAHRC NWL

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Public involvement in NIHR research in 2025 #BreakingBoundaries #INVOLVE2014

  • 1. Breaking Boundaries #INVOLVE 2014, Birmingham Simon Denegri Chair, INVOLVE NIHR National Director for Public Participation and Engagement in Research
  • 2. ‘Coming together is a beginning, staying together is progress, and working together is success.’ Henry Ford
  • 4. Improving health by doing research a better way
  • 5. A joint venture Improving health is our first concern Knowledge is valued Partnership is equal
  • 6. What you told us about PPI in 2014 • The value of working with the public, and the difference it makes to the quality of research • Inconsistencies in practice and implementation across NIHR and other funders • Barriers to the public contributing to research including awareness, attitudes and support • The importance of partnership and collaboration to future success • The need to recognise and share good practice.
  • 7. Your future priorities #PPI2025 • Greater public awareness of research and the NIHR’s role in making it happen • Actionable evidence of the value of public involvement • Locally relevant but strategically consistent implementation • Clarity over quality and good practice in public involvement • Agreed measures for how public involvement is making a difference • Global partnership and better links with the NHS and other funders.
  • 8. ‘Public involvement [should] be so embedded in the culture of NIHR that new staff or new researchers coming into the field would naturally take on the values and practices of effective public involvement.’ ‘Our vision for PPI in research in ten years’ time is that of ...a vast increase in the number of people who know about PPI and have taken part in some way in local research.’
  • 9. Common goals • Opportunities to engage and become involved in research are visible and seized by the public. • It is standard practice for the public, researchers and health professionals to work together with confidence and success. • The experience of patients, service users and carers is a fundamental and valued source of knowledge. • Public involvement is a required part of high quality research researchers and their institutions. • Evidence of what works is easily available and can be put into practice. • The NIHR has maintained its global presence and influence for working in partnership with the public
  • 10. ‘One NIHR’ ‘Real progress in PPI will not be achieved without an effective mechanism for coordinating PPI efforts across the now many NIHR bodies that have a role in developing, fostering, or implementing PPI…..’
  • 11. Keeping it simple ‘………..it gets complicated, confusing and messy. People need to know what is out there, how they can get involved and why it's happening. The acronyms, that then need to be spelt out and explained along with the many avenues an opportunity comes from, suddenly gets too difficult to decipher unless you’re an academic or a clinician.’
  • 12. Locally driven, strategically consistent ‘There is far too much duplication, working in silos and re-inventing the wheel. We need to free ourselves up to enable more time and resources for innovation and creativity. ‘ ‘Perhaps regional networks, such as the CLAHRCs and AHSNs can be instrumental in providing a coordinated, clear single message to the public. They could also act as single point of contacts to their communities for all PPI opportunities in their regions ….simplifying access and reducing confusion for the public.’
  • 13. Quality ‘What is required now is a national framework which sets minimum standards for PPI quality, against which funding and ethical approval decision making can be made.’
  • 14. Measuring success Reach Relevance Refinement
  • 15. Topics for discussion #INVOLVE 2014 What would need to be in place locally and regionally for you to work collaboratively to deliver NIHR’s strategic goals for public involvement? What should be our top three priorities to ensure success?
  • 16. Questions Simon.Denegri@nihr.ac.uk Twitter: @SDenegri Blog: http://simondenegri.com/ Thank you to the review panel and CLAHRC NWL