1. Service user involvement and
study success
An analysis of the MHRN portfolio
database
Liam Ennis and Professor Til Wykes

2. Background
 Many funders now require service
user involvement (or justification why
not)
 MHRN directive = assisting
involvement

3. Involvement – what
 “When we talk about service user
involvement, we mean the active involvement of
service users, not their passive involvement as
recipients of services or information. Involving is
often described as doing
things with or by people, rather
than for or to them.
‘Involvement’ covers a range of activities, from
consulting service users abut their views or
wishes, through to working in partnership with them
to develop projects or services, right up to service
users leading projects, services or organisations”
(Taken from TwoCan Associates)

4. Involvement – why
 Ensuring that research questions are
those that are valued by service users
 Enhancing translational value of
research
 Improving quality and feasibility

5. Involvement – where
e.g.
 Setting research priorities (Rose et
al, 2008; Thornicroft et al, 2002)
 Choosing/generating outcomes
(Crawford et al, 2011; Evans et al, 2012)
 Alternative methodologies (Rose et
al, 2011)
 BUT no studies investigate whether
there are benefits to the study itself

6. The present study
 Aims to establish whether:
1) Service user involvement has increased
over time
2) Particular factors are associated with
involvement
3) Service user involvement is associated
with recruitment success

7. Data source
 MHRN portfolio database
 Contains all adopted studies since
2004
 N = 374

8. Measures
 Level of service user involvement:
1. Consultation
2. Researcher-initiated collaboration
3. Jointly/service-user initiated
collaboration, or user-controlled
studies

9. Measures
 Study complexity
 Primary CSG
 Funding body
◦ NIHR/MRC/Charity/International/Government
 Study characteristics
◦ Randomised/Intervention/Follow up
 Adoption order

10. Outcomes
 Levels of servicer user involvement
 Successful recruitment (>90% -
nationally set target by NIHR)

11. Statistical analysis
 Change in service user involvement over
time was assessed by correlating adoption
order with level of service user involvement
using Pearson’s product moment
 Predictors of levels of service user
involvement were explored using
multinomial logistic regression
 Associations with participant recruitment
were explored using binary logistic regression
(N = 135)

12. Results
 Service user involvement was
modestly correlated with adoption
order, r = ·12, p <· 05 showing that
involvement has increased over time.

13. Predictor Wald's chi-square p odds ratio
CSG
Psychotic disorders 0·66 ·42 0·68
Mood disorders 1·69 ·19 0·46
Other common mental disorders 3·46 ·06 0·29
Developmental disorders 6·31 ·012* 0·06
Personality disorders 5·82 ·016* 0·17
Social interventions 5·14 ·023* 0·14
Funder
NIHR 5·97 ·015* 4·45
MRC 0·18 ·67 0·72
Government 0·001 ·97 1·03
Charities/not for profit 1·64 ·20 3·03

14. Consultation
Researcher
70 Initiated
60 Jointly/Patient-
initiated/Patient
controlled
50
% 40
30
Mean
20 proportion
in highest
10 category
0
NIHR MRC Government Charities/not International
Funder for profit

15. Predictor Wald’s chi-square p odds ratio
Results
Non-follow up 5·94 ·015* 0·23
Complexity 6·55 ·010* 0·83
Involvement
Researcher initiated 1·41 ·236 1·63
Jointly initiated or higher 4·58 ·032* 4·12

16. Interpretation: context
 Important to emphasise associations,
not causality
 Therefore only provides directions for
future research
 Need more variables to delineate this
relationship

17. Why might the association
exist?
 Language in information sheets etc
 Least-burdensome design of research
 Intrinsic appeal of service user
involvement

18. Limitations
 Unmeasured factors, e.g. researcher
commitment
 Detail of categories of involvement
 Are researchers involving users as
they set out to?

19. Future directions
 More research…
 MHRN adoption forms could help
delineate the relationship by
requesting more detail & being more
specific about the information required