Presentation to the INVOLVE Group meeting in January 21st on the Breaking Boundaries strategic review of public involvement - its conclusions and draft recommendations.

1. Update on NIHR Review of Public Involvement
INVOLVE Group Meeting, 21st January 2015
Simon Denegri, NIHR National Director for Patients and the Public, and Chair,
INVOLVE (UK)

2. Terms of reference
• 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 set the direction, tone and style of public
involvement across the NIHR over the next 10 years.

3. Five areas of inquiry
1. Overall evaluation of progress to date
2. Barriers to public involvement
3. How to do things differently
4. Future design and delivery
5. What will success look like

4. Review response
1. Online survey > 500 responses from patients,
researchers, research staff
2. Written submissions > 80 from organisations
and institutions
3. Collaborative responses by function, region or
institution
4. Oral evidence sessions with intl guests, charities
and industry
5. Local discussions as part of regional PPI
meetings

5. What people 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.

6. People’s 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
• Better links with the NHS and other funders and global
partnership

7. Partners in everything we do
‘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.’
Report sets out a vision, mission and strategic goals
and embraces the principles of co-production

8. 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

9. A simple proposition to the public
‘………..it gets complicated, confusing and messy. People need
to know what is out there, how they can get involved and why
it's happening.’
‘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.’
Recommendations on information and communication, a
single access point for the public, incentivising innovative ways
forward

10. Strategic leadership - ‘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…..’
Recommendations for a new NIHR ‘leadership group’ for
PPI, NIHR-wide PPI forum etc., reporting and monitoring,
prioritising of strategic issues such as diversity and
inclusion

11. 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.’

12. A locally driven, strategically consistent
system
Locally driven
• Resources weighted towards
local ‘delivery’
• Collaborations/collaborative
working
• Clear definition of local health
needs and involvement of
communities in priority setting
• Emphasis on communities v
individuals – ‘reach’
• Clear ‘line of sight’ from local
to centre – transparency
• Innovation
Strategically consistent
• Accountability
• Sets tone and style
• In line with NIHR goals
• Focus on facilitative actions
• Problem solving strategic
issues cutting across
boundaries
• High-level monitoring and
evaluation
• Scale

13. Continuous improvement
‘The NIHR should commission the development of a set of
values, principles and standards for public
involvement…..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.’
Recommendation on quality agenda (above) and
promoting a learning and development culture

14. Measuring success
Reach
Relevance
Refinement

15. Implementation
Three phases:
• Brief period to hear back from people and to respond
• Putting in place the new structures and groups
(INVOLVE contract included!)
• ‘Line of sight’ exercise with local and regional
colleagues over 2015/2016

16. Questions
Simon.Denegri@nihr.ac.uk
Twitter: @SDenegri
Blog: http://simondenegri.com/
involvementlastminute.com