NiHR public contributors' feedback report April 2019

NIHR (2019) NIHR public contributors’
feedback survey:
Results from a national survey of people’s
experience of being involved in NIHR’s work.
April 2019
Simon Denegri, NIHR National Director for
Patients, Carers and the Public

What’s it like being involved in
NIHR research?
National survey of people’s experiences
Key themes:
• We have a strong, supportive and highly motivated public involvement
community
• Vast majority feel they make a difference and that their contribution is valued
• People form their view about research and the NIHR based upon their ‘local’
relationship
• They are fulfilling a range of roles for us and other funders/organisations
• Diversity remains a significant issue for us – age, ethnicity etc.
• There is considerable variety and inconsistency in practice ‘Sometimes,
but…,’ ‘Yes, but….’
• Communications, feedback and acknowledgement areas for clear
improvement

NIHR research?
Objectives:
• To find out more about our public involvement community, their experience of
being involved in NIHR research
• To find out more about whether they felt valued by the NIHR and had the
opportunity to make a difference.
• Also, what does ‘difference’ look like to NIHR public contributors and use this
as the basis of developing a PPI impact statement for the NIHR.
• To help establish benchmarks against which future progress in advancing
and promoting public involvement can be measured in the future
• To set a precedent for doing similar work in future years as part of an overall
strategy of improving feedback and communications.

NIHR research?
Methodology
• Survey developed with impact working group including public contributors
• 19 survey questions tick box and open ended comments
• 3 sections about: the respondent, their involvement, and experience of
working with NIHR
• Questions piloted by public members (Oct – Nov 2018)
• Survey open from 10 December 2018 – 14 January 2019
• Good response = 809 responses with a 72% completion rate – largest NIHR
survey of public contributors on involvement experience
• Survey only available online which may have limited its accessibility and
appeal to some groups
• Provides a national picture but does not break this down into regions or
different parts of the NIHR

35%
58%
1%
6%
Respondents - Gender (N=809)
Male (35%)
Female (58%)
Non-binary (1%)
Not stated (6%)
Key point:
Underrepresentation
of men
Women (58%)
Men (35%)

4%
20%
24%
18%
14%
2%
18%
Respondents - Breakdown by Age
(N=809)
80 + (4%)
70-79 yrs (20%)
60-69 yrs (24%)
50-59 yrs (18%)
26-49 yrs (14%)
25 years and under (2%)
Not stated (18%)
Key point: under-
representation of
younger age groups
Less than 25 years (2%)
26 – 49 years (14%)

77%
2%
5%
3%
2%
3%
8%
Respondents - Ethnic origin (N=809)
White - British (77%)
White - Irish (2%)
White – Other (5%)
Asian/Asian British /Asian
Other (3%)
Black or Black British (2%)
Mixed Heritage/ Other (3%)
Not stated (8%)
Key point: Underrepresentation of
minority ethnic groups
Asian ethic groups 3% (ONS fig. 7.2%)
Black ethnic groups 2% (ONS fig. 3.3%)

44%
30%
8%
7%
9%
2%
Respondents - Main perspective of
contributors (N=809)
a patient / service user
(44%)
a member of the public
(30%)
a carer (8%)
a service user
researcher (7%)
other (9%)
not stated (2%)
Key points:
• Underrepresentation of
carers (8% )
• Most (74%) were either
patients / service users or
members of the public with
lived experience

12%
47%
19%
7%
2%
13%
Involvement - Length of time
involved in NIHR's work (N=809)
Under a year (12%)
1-5 years (47%)
6-10 years (19%)
11 years+ (7%)
Don't know (2%)
Not stated (13%)
Key point: NIHR continue
to involve new public
contributors
• in past 12 months (12%)
• between 1-5 years (47%)

What role do
public
contributors
play?

48%
15%
20%
52%
9%
41%
7%
13%
6%
27%
Experience - Worked with other organisations (N=575)
Key points:
• Our public contributors are involved in many other organisations and
have an important role in the future in building partnerships and collaborations
• Social care and industry are key areas where we need to support
the development of involvement

22%
33%
43%
11%
43%
22% 22%
17%
23%
32%
16% 15%
Involvement - Extent and range of (multiple) activities
(N=700)
Series1
Key Points:
• People are playing a number of roles within their part of the NIHR
• But based on comments these may not all be accurate descriptions of their activities. For example:
when people ticked the ‘co-applicant’ and/or ‘co-author’ boxes, their comments were generally about
involvement in reviewing research applications or final reports.
“ these categories need greater definition in accessible language for me to understand and answer fully
(maybe with some examples)”[Comment from a respondent]

What is their experience like?
‘Yes, but……’

Is it easy to get involved?
‘Yes’ box (67%)
• “Yes once you are ‘in’ it is easy. ..but
to start with it’s a bit of a maze’
‘Sometimes’ box (23%)
• “Sometimes researchers have been
eager for PPI involvement, others
have done it entirely tokenistically -
not actually wanting us there”
• “I've had to actively seek out
involvement opportunity which takes
a lot of time and effort, plus there's
having to fight your way into
involvement even when you've
identified an opportunity. Things
pretty well-hidden and exclusive.”
[Comments from respondents]
67%
6%
23%
4%
Q7. Easy to get involved
in NIHR's work? (N=692)
Yes (67%)
No (7%)
Sometimes
(23%)
Don't know
(4%)

Most helpful support?
Yes but….
For example on payments rated the
most helpful support (expenses(24%);
time 23%)
“This is all a 'Yes' but..... The expenses
systems and systems for payment are
rarely easy to navigate or just are not set
up to pay patients/lay people.
The hoops that some institutions have
made me jump through have been extreme
and then the payment times vary from
'great' to 'that took months'.
Then there is willingness to pay a
meaningful amount which values both my
time at the meetings and my time on all the
emails in between the meetings and there
is how to charge for a teleconference…...”
[Comments from respondent]
24%
23%
18%
7%
6%
14%
8%
Qu 10. Most helpful of the
support received (N=552)
Arrangement for
receiving
expenses (24%)
Payment for time
(23%)
Training (18%)
Support for
accessibility (7%)
Mentoring (6%)
Other support
(14%)
Don’t Know/ Not
stated (8%)

64%
13%
20%
3%
Are you kept up to date about NIHR work
you’ve been involved in? (N= 611)
YES (64%)
NO (13%)
SOMETIMES (20%)
DON'T KNOW (3%)
How would you like to be
kept up-to-date? (n=585)

40%
38%
15%
3%
4%
Satisfaction with experience of
involvement in NIHR's work (N=605)
Very satisfied (41%)
Satisfied (38%)
Sometimes satisfied
(15%)
Not satisfied (3%)
Don't Know (4%)

Satisfaction with experience of
being involved in NIHR research?
High overall satisfaction rating with many positives and lots of goodwill on the
part of public contributors. However….
• It remains difficult for many people to get through our front door and become
part of what we do
• Even the best experiences are often couched in a ‘Yes, but…..’
• Feedback and communications is a major area of improvement:
– Can we really hold our hand up and say we are a learning based
organisation?
– How do people know they are making a difference without good
feedback?
• People’s experiences are based on their ‘local’ relationship (with a PI,
research team, institution) – they are not sure about NIHR or how important
they are to it?
• Persistent questions over authenticity of involvement

Satisfaction with experience of involvement in
NIHR’s work - comments
“Most satisfied hearing different
perspectives that are really valuable and
are likely to improve the research project
and project outcomes.”
“I am satisfied that my input has
been valued and when feedback are
given to applicants my contribution is
considered. I believe my involvement is
helping to improve quality of care
through new research or modifying
existing care approach. I have no major
dissatisfaction, however, would like an
induction and mentoring at the start.”
“The opportunities are interesting
and informative and the teams I am
involved with are generally extremely
supportive and good to work with.”
“Sometimes satisfied: the genuine
satisfaction that researchers have
shown as they come to recognise
the capability PPI can provide.
Least satisfied: a) mistaking
'informing' for 'involving' b) not giving
feedback (most usually when a
project such as a grant application
has been unsuccessful).”
“ Most satisfying - feeling input is
being taken into account. ..
Least satisfying feeling input is a
‘tick box’ exercise”
Not satisfied “Lack of feedback
and complicated processes”
[comments from respondents]

55%
22%
19%
4%
Feedback
Have you received
feedback on your
contribution? (N=607)
Yes (55%)
No (22%)
Sometimes
(19%)
Don't know
(4%)
49%
32%
13%
6%
Have you been asked to
give feedback on your
experience of
involvement (N=608)
Yes (49%)
No (32%)
Sometimes
(13%)
Don't know
(6%)

Summary suggestions
Themes included:
“Give me more to do!”
• Public contributors want to do more, be offered more and
know how to find out about other opportunities for involvement
“Encourage use of plain language”
• Plain English/jargon guide - make the NIHR’s work and the
public contributors’ role all easier to understand
“Have a more diverse range of people … to make NIHR’s
work much more meaningful and reach out to a wider
audience”
• Inclusion of different skills and experiences
“Openness regarding the choices you make and more about
who actually makes them.”
• More transparency and openness about NIHR PPI processes

Summary suggestions - feedback
“Feedback, feedback, feedback”
Suggestions for more consistent:
• feedback on public contributors’ individual
contributions and the difference they made, if they
should do anything different for example in reviewing
and what happened as a result of their review
• feedback on projects that get funded
• feedback on the findings of research they were
involved in as well as the impact of PPI in the study
• feedback in general re PPI in NIHR and NIHR
research what is happening

Summary suggestions - communications
“Keep us informed, communication is poor”
Suggestions for :
• Better, more accessible communication about the
work of NIHR in general
• NIHR PPI newsletter include information on
opportunities for involvement, updates on research
projects, links to wider issues
• Acknowledgement of public contributors’ involvement in
articles and research
• Keeping in contact – making public contributors feel
valued, acknowledged for their involvement as
meaningful rather than tokenistic

Is your contribution valued
by the NIHR?
• “Yes ‘I feel that it has been
appreciated by the teams that I
work for, but I haven't had
direct contact with NIHR to
know what they think.”
• “I think it is valued but it is not
always clear that it is or why.”
• “Sometimes researchers have
given the impression that they
are involving the public
because they have to 'tick the
box'.”
[Comments from respondents]
65%
1%
15%
19%
Qu 8. Is your contribution
valued by the NIHR? (N=618)
Yes (65%)
No (1%)
Sometimes
(15%)
Don't know
(19%)

Do you think you are
making a difference?
“Yes but can only tell when you
get feedback which I have
mostly but not always had….
Quite often the feedback is that
it was very useful but then there
is little or no indication after the
event of anything happening as
a result. … it may just be a task
too many but lack of feedback
makes it difficult to know
whether my involvement is
useful”
[Comment from a respondent]
69%
3%
15%
13%
Qu 11. Do you think your
involvement made a
difference (N=607)
Yes (69%)
No (3%)
Sometimes
(15%)
Don't know
(13%)

What difference you would like your
involvement to make

What difference you would like your
involvement to make (N=519)
Final outcome: result in tangible changes to the health care
system – improved services and better treatments for
patients
By:
• influencing the research itself – inclusion of patient voices -
improving the quality and relevance of the research
• supporting research participants in clinical trials or studies
– better understanding of and access to taking part in
research.
• working with researchers – acknowledging the benefits of
involving patients in their work
• producing information about research for the public -
providing accessible/ easy to read articles / presentations

This report should be referenced as:
NIHR (2019) NIHR Public contributors’ feedback survey: Results
from a national survey of people’s experience of being involved in
NIHR’s work, …..insert web link
Acknowledgements:
Simon Denegri and Maryrose Tarpey would like to thank members of
the NIHR public involvement impact working group and the many
others who helped us pilot the survey and comment on the draft
analysis of the findings.
Special thanks to Wendy Baird, Jon Cole, Helen Hayes, Rachel
Matthews, Una Rennard, Erin Walker, Judith Williamson, and Philippa
Yeeles.

Thank you
Simon.Denegri@nihr.ac.uk
Twitter: @SDenegri
Blog: http://simondenegri.com/
April 2019

NiHR public contributors' feedback report April 2019

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