This talk was given to the Alberta Cancer Foundation in Calgary, January 2015. It looks at different approaches to public involvement in research funding by UK charities. It also includes some updated slides on the results of the Breaking Boundaries review.

1. From ‘subject’ to ‘partner:’ public involvement in health
research
Alberta Cancer Foundation, 31st January 2015
Simon Denegri, NIHR National Director for Patients and the Public
and Chair, INVOLVE (UK)

2. Adding value to research
‘Only 9% of patients wanted more research on
drugs, yet over 80% of randomised controlled trials
in patients with osteoarthritis of the knee were drug
evaluations.’
‘Relations between the agendas of the research community and the
research consumer’ Tallon et al, Lancet 2000 as cited by
Iain Chalmers and Paul Glasziou, The Lancet, 2009

3. Why involve the public in health
research?
• Accountability – ‘protect and promote the
public interest’
• Improving the quality of what we do: ‘research
excellence’
• Improving health and wellbeing - outcomes
• Ensuring value and efficiency
• Increasing participation
• Knowledge transfer

4. The National Institute for Health Research
(NIHR) approach to public involvement in
research

5. Participation, engagement,
involvement

6. A working definition of public
involvement
….public involvement in research = research being
carried out ‘with’ or ‘by’ members of the public
rather than ‘to’, ‘about’ or ‘for’ them.
This includes, for example, working with research
funders to prioritise research, offering advice as
members of a project steering group, commenting
on and developing research materials, undertaking
interviews with research participants.

7. Public involvement in the National
Institute for Health Research (NIHR)
• Core principle of NIHR’s ‘business’
• PPI leadership across a distributed research system
• Solid and sustainable funding
• Success built on ‘partnership’ working
• Clear expectation set with researchers
• A ‘marriage maker’ or a ‘deal-breaker’
“I have always taken the view that public involvement in research
should be the rule not the exception.” Professor Dame Sally
Davies, Chief Medical Officer (CMO)

8. What we aspire to:
A dynamic partnership between the
public, researchers and others, to
advance NHS, public health and social
care research and improve the health
and well being of the population
Established in 1996 INVOLVE is a
national advisory group funded by, and
part of, the National Institute for Health
Research. http://www.invo.org.uk/
What is INVOLVE?
How we do it?
• Leadership across NIHR
• Build and share the evidence base
• Develop capacity and capability
• Influence policy and practice

9. The UK public and research in numbers
691 NIHR reviewers
634,000 research participants
1,000,000 INVOLVE website visitors
11.2 Million funders
89% of people are willing to
take part in research
3% of people would not take part in a clinical trial
http://www.nihr.ac.uk/documents/about-NIHR/NIHR-Publications/NIHR%20Christmas%20xmas%20stats%202014.pdf

10. Putting trust into the system
• 7 in 10 people think
that Government,
regulators and research
organisations should
listen to the public
more
• 3 in 10 of us would be
willing to get involved
PAS Report, 2014, Department for Business,
Innovation and Skills https://www.ipsos-
mori.com/researchpublications/researcharchi
ve/3357/Public-Attitudes-to-Science-
2014.aspx

11. Putting trust into the system
HRA Public Dialogue Exercises
• 77% of people said that knowing a
Research Ethics Committee had
reviewed a study would increase their
confidence in it.
• 44% of respondents thought that
involving patients….would increase
their confidence in the study.
• HRA and MHRA now have public
involvement strategies and structures
in place
Ipsos MORI study for HRA: 2013
http://www.hra.nhs.uk/news/2013/11/22/pa
tient-involvement-increases-public-
confidence-health-
research/#sthash.x3fCMNWj.dpuf

12. Increasing research effectiveness and
efficiency
‘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.’
Professor Til Wykes, 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
Design

13. Shaping research design for the future
Coming to Calgary!

14. Emerging approaches to public
involvement in health research: charities
and foundations

16. Setting research priorities
http://www.netscc.ac.uk/news/item/08042013.asp

17. Better informed funding decisions
‘…..the driving force behind the USER
project was, and still is, a desire to
influence funding practice, helping to steer
the research agenda along a path set by
both the charity’s goals and the
aspirations and needs of the individuals
who support the charity and hope
to benefit from its research.’
http://www.arthritisresearchuk.org/researc
h/our-committees/join-our-
committees/user-stakeholder-
committee.aspx

18. Partners in design and delivery: networks
http://www.alzheimers.
org.uk/site/scripts/docu
ments.php?categoryID
=200422

19. Building research capacity and
capability

20. Making research part of the care pathway

21. Working with the health system to
improve participation and engagement

22. Public appetite
• 82 per cent of people believe it is
important for the NHS to offer
opportunities to take part in
healthcare research.
• 3% said they would never take
part in a clinical research study.
NIHR Clinical Research
Networks Survey Oct 2014
• Over 70% of patients look for
information about clinical trials
ecancer 5 235 2011 ‘Information
needs of cancer patients’
Patient experience
• National Cancer Patient Experience
Survey 2012/2013/2014
– 1 in 3 patients had a discussion
about research with a health
professional
• Discussion much less likely if
happening at all for patients with
other conditions (i.e. 1 in 5 for type
1 diabetes)
• 91% of Trusts do not provide
information to support patient
choice in research: NIHR CRN CC
Mystery Shopper 2013
From willing to active patients

23. The baked beans test
“Some people sit in a bath of baked beans or run
a marathon. For me, I just thought ‘if not me
then who?’ “It’s nice to be part of it and it gives
you a way to help.”
Sheridan Edward
Opera singer, Ebola vaccine clinical
trial volunteer on standby!

24. NIHR Strategic Plan for Participation and Engagement
launched on 20 May 2014
• Better outcomes for all in health and care
• People choosing to take part in research
• People defining research of the highest quality
• People understanding the evidence on which their
care is based
• Improving people’s experience in research
‘Promoting a research active nation’

25. ‘OK to Ask’
campaign:
International
Clinical Trials Day
2014
Ambassadors and
champions
• Encouraging patients and
carers to ask their clinician
about clinical research (and
log response/suggestions)
• Encouraging clinicians to
consider their response if a
patient does ask: how to
channel interest

26. Digital platforms for participation and more

27. Improving the patient experience
Improving patient experience:
• Removing barriers
• Information and consent
• Quality of care
• Relationship with professionals
• When the trial is over – results
and acknowledgement?

28. The research hospital
http://simondenegri.com/2013/11/04/rbandh-guest-blog-promoting-clinical-
research-locally-from-ok-to-ask-to-research-changed-my-life/

29. Cometh the hour, cometh the patient
‘We stand on the cusp of a revolution in the role that
patients – and also communities – will play in their
own health and care. Harnessing what I’ve called this
renewable energy is potentially the make-it or break-it
difference between the NHS being sustainable – or not.’
Simon Stevens, NHS CEO, NHS Confederation Annual
Conference, June 2014

30. And finally……..

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

32. Public involvement in NIHR funded
research: from partnership to co-
production

33. 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.

34. 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

35. 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.’

36. 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

37. A simpler 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.’

38. 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…..’

39. 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.’

40. 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

41. 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.’

42. Recommendations
- Information and communication
- Strategic leadership across NIHR
- Supporting ‘locally inspired and driven’ public
involvement
- Development of quality standards with self-assessment
criteria
- Learning and development support for patients and
researchers
- Diversity and inclusion
- Measurement and evaluation