It’s an exciting time in health research. As a broader view of what constitutes expertise and research evolves, barriers between the research community and the public are eroding, paving the way for the growth of patient and public involvement (PPI) in research. PPI occurs when individuals meaningfully and actively collaborate in the governance, priority setting, and conduct of research, as well as in summarizing, distributing, sharing, and applying its resulting knowledge. PPI is an important step in ensuring that the real life experiences of patients are considered in decision-making processes around research.

1. Patient and Public
Involvement in Research:
From Rhetoric to Reality
16th Annual Psychology, Health
and Medicine Conference
Maynooth University
22 March 2019
Marie Ennis-O’Connor
tweet me @JBBC
#phm2019
#loveirishresearch

2. “Everyone who is born holds dual
citizenship, in the kingdom of the
well and in the kingdom of the sick.
Although we all prefer to use only
the good passport, sooner or later
each of us is obliged, at least for a
spell, to identify ourselves as citizens
of that other place.”
Susan Sontag, Illness As Metaphor, 1978

3. 10 QuestionsTo Frame Our
DiscussionToday
1. What do we mean by
patient and public
involvement in research?
2. Why do patients engage
with PPI?
3. How does PPI benefit
researchers?
4. What is the value of PPI?
5. How do you plan to include
PPI in your research?
6. Who do you plan to
include?
7. What are some key practical
considerations in PPI research?
8. Which barriers and
challenges do we need to
overcome?
9. How can we move from
tokenistic to meaningful
engagement?
10. How should we measure
PPI?

4. Q 1
What do we mean by
patient and public
involvement in research
(PPI)?

5. PPI occurs when individuals
meaningfully and actively
collaborate in the governance,
priority setting, and conduct of
research, as well as in summarizing,
distributing, sharing, and applying
its resulting knowledge.

6. Spectrum of Engagement

7. TO For With
“There is a critical difference between
going through the empty ritual of
participation and having the real power
needed to affect the outcome of the
process." (Arnstein)

8. Q 2
Why do patients engage
with PPI?

10. “It gives me a sense of self-
esteem… to be able to use a little
bit of my experience is very
important, you feel valued and that
you can contribute something.”
- Michael K.
“I have enjoyed being part of
things and it has given new
meaning to my life and helped
when I was feeling down. It has
helped me communicate again
with the world.”
- Liz G..
 Want to give back
 Quest for answers
 Understand research
better
 Want to change an
unmet need
 Gain personal meaning
 Be a voice for those who
are voiceless
 Sense of purpose
 Feeling valued
 Increased confidence &
self-esteem

11. For patients, involvement is more
than just about the research.
It is a commitment to advancing
patient care and outcomes for
other patients and families
experiencing similar issues – both
present and future.

12. Q 3
How does PPI benefit
researchers?

13. (i)
Funding
Fulfilling funding requirements

14. (ii)
Publication
Fulfilling publication requirements

15. Q 4
What is the broader
value of PPI?

16. (i)
Democratic Right
Moral obligation and accountability

17. (ii)
Patient Centred
Care Model
Evidence based care

19. (iii)
Better Quality
Research
More relevant & responsive
to patient needs
 Broadens the research agenda beyond
that set by health professionals and
researchers.
 Better alignment of research
objectives through priority-setting
activities.
 Improves quality of search designs.
 Improves informed consent processes.
 Better insight into research gaps.
 Wider impact and application of
research findings.

20. As a researcher, I engage in
PPI because I believe it to be
best practice. For my
research to be as relevant as
possible and the best value
for money it makes sense
for me to engage with and
learn from the people who
live with these diseases
every day.”
Emma Dorris
UCD

21. Whose interests does the impact agenda serve?

22. Mismatch between
available research
and patients’
preferences.

23. What The Research Shows

24. From knowledge gaps…

25. (iv)
Community Value
 Expands applicability.
 Enhances acceptability & trust.
 Increases translation,
dissemination of results.
 Greater community
empowerment.
 Builds a more research co-
operative spirit within the
community.

26. (v)
Experiential
Knowledge
New perspective and insight
Relatability and empathy

27. Not “just the patient
story”

28. Isabel’s story: a cautionary tale

29. Q 5
How do you plan to
include PPI in your
research?

30. Step 1
Define your purpose and
vision.

31. Medical Research Charities Group
www.mrcg.ie

32. Step 2
Clarify roles and
responsibilities

34. Step 3
Decide level of
involvement

35. PPI In The Research Cycle
Identifying
Prioritising
Design
Undertaking
Management
Analysing
Interpreting
Disseminating
Implementing

36. PPI In The Research Cycle
Identifying
Prioritising

37. You Don’t Know What You Don’t Know

38. PPI In Action

39. PPI In The Research Cycle
Identifying
Prioritising
Design

40. PPI In The Research Cycle
Identifying
Prioritising
Design
Undertaking
Management

41. PPI In The Research Cycle
Identifying
Prioritising
Design
Undertaking
Management
Analysing
Interpreting

42. PPI In The Research Cycle
Identifying
Prioritising
Design
Undertaking
Management
Analysing
Interpreting
Disseminating
Implementing

43. Research Dissemination
In A Digital Age

44. “To him who devotes his life to
science, nothing can give more
happiness than increasing the
number of discoveries, but his
cup of joy is full when the results
of his studies immediately find
practical applications.”
- Louis Pasteur

45. Q 6
Who do you plan to
include?

47. Things To Consider
 Are you looking for those who
have accessed the health services
personally? Or would you
consider the role of carers?
 How recent do you want their
experiences to be?
 How important is it that the group
is demographically
representative?
 Are there particular personal
qualities or skills you desire?
 How will you be more inclusive?

48. Diversity
How will you go beyond the “usual
suspects” to encourage people who are
seldom heard to take part?

49. Where will you find
PPI partners?
 Personal
connections.
 Support groups,
community groups
and charities.
 Social media
networks – Twitter/
Facebook groups/
Facebook ads.

51. Q 7
What are some key
practical considerations?
 Where will meetings be held?
 Are there accessibility issues?
 What is the time commitment
expected?
 What preparatory work will be
required to carry out in advance
of meetings (e.g. pre-reading?)
 How will you support PPI
partners to participate?
 Will you need to provide
mentoring/training?
 What resources do you have to
do this?
 Are you paying patients?
 How will you manage expenses
reimbursement?

52. Patient
• Research terminology
• Research methods
• Research process
• Reviewing documents
• Managing emotions
Researcher
• Recruitment
• Payment
• Good chairing
• Communication
• Managing emotions

53. Payment and
Reimbursement
Things to consider
 Should you pay patients?
 Does payment create bias?
 How much should you pay?
 Creates more equal relationships
with professionals.
 Demonstrates equal recognition of
skills.
 Shows that people’s contributions
are valued and respected.
 Recognition of time and cost.
 May help recruit a more diverse
group of people (not only those
who can afford to take time off
work).
 Reimbursements for out‐of‐pocket
expenses should be viewed as an
absolute minimum.

55. Q 8
Which barriers and
challenges do we need
to overcome to make
PPI more meaningful?
 Lack of time
 Entrenched thinking
 Challenges to traditional scientific
knowledge
 Not wanting to cede control
 Power imbalance
 Inconsistent approaches
 Lip service/tick box

56. I guess, I'm a bit scared
of this idea of handing
over some of the power
and control to the public
so they can influence
how research is
conducted, because, I
feel like the decisions
would be quite naive. It
may not necessarily be
in the best interests of
research progress.”
“ I spent years training and studying
to be a researcher and to really get
to grips with the whole research
process and these people have
been bobbing around taking pills
and whatever and claiming
incapacity benefit for 5 years and
they are coming in and suddenly
they are the experts and they have
done no studying, no qualifications
and that’s not right, their
experience cannot outweigh my
academic qualifications and
knowledge. ”

57. Q 9
How can we move from
tokenism to meaningful
engagement?

58. Tokenism:
The practice of making only a perfunctory or symbolic
effort to do a particular thing.

59. PPI
PPI is
undervalued
Leads to
token
involvement
PPI fails to
demonstrate
value
“We will end up with little more
than the scientific equivalent of
corporate social responsibility: A
well‐meaning, professionalized
and busy field, propelled along
by its own conferences and
reports, but never quite
impinging on fundamental
practices, assumptions and
cultures.”
Wilsdon J, Wynne B, Stilgoe J. The Public Value
of Science: Or how to Ensure That Science Really
Matters. London: Demos, 2005.

60. Meaningful
Engagement
Facilitators
PPI
Respect
Trust
Relationships
Sustained

61. “PPI is a working
relationship and it should
be treated as such.
Reciprocal respect and
creating a welcoming and
open environment is key.
A good working
relationship that allows
honest dialogue &
discussions is paramount
for successful.”

63. Q 10
How should we
evaluate PPI?

66. But…
Should we measure PPI?

68. Ride The PPI
Rollercoaster!