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The contribution of advisory committees and public involvement to large studies: Case study


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Many large studies have complex advisory committee structures, yet there is no empirical evidence regarding their optimal composition, scope and contribution. The aim of this study was to inform the committee and advice infrastructure for future research studies. In the context of a five-year study funded by the UK National Institute for Health Research, three advisory committees were formed. In addition, advice was obtained from individual experts. All recommendations received in the start-up phase (first seven months) of the study were recorded, along with the decision about implementation of the recommendation. A particular focus was on the impact of public involvement. A total of 172 recommendations were made, including 70 from 20 individual experts. The recommendations were grouped into five emergent themes: Scientific, Pragmatic, Resources, Committee and Collaboration. Most recommendations related to strengthening existing components or adding new components to the study protocol. Very few recommendations either proposed removing study components or contradicted other recommendations. Three 'implementation criteria' were identified: scientific value, pragmatic feasibility, and paradigmatic consistency. 103 (60%) of recommendations were implemented and 25 (15%) were not implemented. The benefits identified by the research team were improved quality and confidence, and the costs were increased cognitive demands, protocol revision time, and slower progress. The findings are discussed in the context of the wider literature on public involvement in research. Six recommendations are identified. First, have a clear rationale for each advisory committee expressed as terms of reference, and consider the best balance between committees and individual consultation with experts. Second, an early concern of committees is inter-committee communication, so consider cross-representation and copying minutes between committees. Third, match the scope of advisory committees to the study, with a less complex advisory structure for studies with more finalised designs. Fourth, public involvement has a mixed impact, and relies on relationships of trust, which take time to develop. Fifth, carefully consider the match between the scientific paradigm applied in the study and the contribution of different types of knowledge and expertise, and how this will impact on possibilities for taking on advice. Finally, responding to recommendations uses up research team resources, and the costs can be reduced by using the three implementation criteria.
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The contribution of advisory committees and
public involvement to large studies: case study
Mike Slade
, Victoria Bird
, Ruth Chandler
, Jo Fox
, John Larsen
, Jerry Tew
, Mary Leamy
Background: Many large studies have complex advisory committee structures, yet there is no empirical evidence
regarding their optimal composition, scope and contribution. The aim of this study was to inform the committee
and advice infrastructure for future research studies.
Methods: In the context of a five-year study funded by the UK National Institute for Health Research, three
advisory committees were formed. In addition, advice was obtained from individual experts. All recommendations
received in the start-up phase (first seven months) of the study were recorded, along with the decision about
implementation of the recommendation. A particular focus was on the impact of public involvement.
Results: A total of 172 recommendations were made, including 70 from 20 individual experts. The
recommendations were grouped into five emergent themes: Scientific, Pragmatic, Resources, Committee and
Collaboration. Most recommendations related to strengthening existing components or adding new components
to the study protocol. Very few recommendations either proposed removing study components or contradicted
other recommendations. Three implementation criteriawere identified: scientific value, pragmatic feasibility, and
paradigmatic consistency. 103 (60%) of recommendations were implemented and 25 (15%) were not implemented.
The benefits identified by the research team were improved quality and confidence, and the costs were increased
cognitive demands, protocol revision time, and slower progress.
Conclusions: The findings are discussed in the context of the wider literature on public involvement in research.
Six recommendations are identified. First, have a clear rationale for each advisory committee expressed as terms of
reference, and consider the best balance between committees and individual consultation with experts. Second, an
early concern of committees is inter-committee communication, so consider cross-representation and copying
minutes between committees. Third, match the scope of advisory committees to the study, with a less complex
advisory structure for studies with more finalised designs. Fourth, public involvement has a mixed impact, and
relies on relationships of trust, which take time to develop. Fifth, carefully consider the match between the
scientific paradigm applied in the study and the contribution of different types of knowledge and expertise, and
how this will impact on possibilities for taking on advice. Finally, responding to recommendations uses up research
team resources, and the costs can be reduced by using the three implementation criteria.
The national research strategy for the National Health
Service (NHS) in England identifies a goal of establish-
ing the NHS as an internationally recognised centre of
research excellence[1]. Approaches outlined in this
strategy include increasing participation in health
research with high-quality protocols, with a particular
focus on increasing the number of people who enter
multi-centre trials. One new mechanism is the introduc-
tion of Programme Grants for Applied Research,
described as substantial, prestigious awards...over three-
to five-year periods, in order a series of related
projects which form a coherent theme in an area of
priority or need for the NHS(p. 25).
The current study was undertaken in the context of a
larger research programme. In November 2008 a £2 m
(US$3.2 m) five-year (2009-2014) Programme Grant was
awarded for a study titled REFOCUS: Developing a
* Correspondence:
Health Service and Population Research Department, Kings College
London, Institute of Psychiatry, Denmark Hill, London SE5 8AF, UK
Full list of author information is available at the end of the article
Slade et al.BMC Health Services Research 2010, 10:323
© 2010 Slade et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons
Attribution L icense (http://creati, which perm its unrestricted use, di stribution, and reproduction in
any medium, provided the original work is properly cited.
recovery focus in adult mental health services in Eng-
land. REFOCUS comprises a series of inter-linked sub-
studies including systematic reviews and meta-analytic
studies, qualitative semi-structured interviews and focus
groups, national surveys, consensus methods, outcome
measure development and psychometric evaluation.
These lead to a multi-centre cluster randomised con-
trolled trial of a complex intervention, supported by
process evaluation and innovation in clinical end-point
assessment. Three of the study researchers are undertak-
ing PhDs related to the study. More detailed informa-
tion on REFOCUS is available at researchintorecovery.
The start-up phase of any study is crucial, since many
key design and implementation decisions are evaluated
and finalised. This phase may be especially important in
relation to large research programmes with multiple
components, due to their added complexity. Clear gui-
dance exists in relation to oversight committees for stu-
dies, including appropriate arrangements for trials to be
monitored by a Trial Steering Committee [2]. Some
components of these oversight arrangements have been
investigated, such as the role of data monitoring and
interim analysis in the DAMOCLES Study [3]. However,
the role of advisory committees - which provide advice
and expertise to support the study but without a formal
oversight function - has not been investigated. Although
it is common to form steering committees to inform
research studies, we could locate no empirical evidence
regarding the optimal composition and timing of advi-
sory committees, or the nature and impact of their con-
tributions. The aim of the study reported here was to
begin this process, by characterising and evaluating the
contribution of various forms of expert input to REFO-
CUS during the start-up phase, by collecting data during
the first seven months of the study. A particular empha-
sis was on the impact of public involvement, in this case
the advisory contributions made from mental health ser-
vice users and carers. There is an evidence gap on how
public involvement improves the quality and relevance
of research, since public involvement is by its nature a
complex, social process[4] (p. 92). Assessing the impact
of this involvement is difficult, and sometimes impossi-
ble [5]. The overall goal was to inform the committee
and advice infrastructure for future research studies.
Case study of contributions from committees and indivi-
dual experts to one research study.
The initial advisory infrastructure for REFOCUS com-
prised three committees. The purpose of each committee
was described in its terms of reference. First, the Steering
Group was composed of the 12 applicants and 7 colla-
borators named in the proposal. The applicants were aca-
demic, clinical researchers, user-researchers or service
leads who together provided cross-cutting expertise rele-
vant to the overall aims of the Programme. Collaborators
brought methodological expertise relevant to specific
sub-studies. The Steering Group was chaired by the Prin-
cipal Investigator, and the terms of reference were to
provide methodological and implementation expertise to
contribute to the success of the study. The committee
met in May and September 2009. As part of the Steering
Group, a cultural and social perspectives sub-group was
formed from the Steering Group membership in May
2009, which communicated by email.
Second, the Lived Experience Advisory Panel (LEAP)
comprised eight experts by experience, i.e. as mental
health service users and carers. Recovery ideas have
emerged from people with personal or livedexperience
of mental illness [6,7], but the mental health system has
been criticised for co-opting or commandeering the
recovery approach [8,9]. The purpose of LEAP was to
retain the integrity of these recovery values, and the
terms of reference were therefore to be a critical friend
to REFOCUS: bringing the perspective of lived experi-
ence to the methodological and implementation deci-
sions. The LEAP committee was chaired by a voluntary
sector representative, and met in May and September
Finally, the International Advisory Board (IAB) com-
prised nine experts from Australia, England, Ireland,
Scotland and the USA. The terms of reference for the
IAB were to provide an international perspective both
on research evidence and best recovery-related practice
in mental health services. IAB meetings were chaired by
the Principal Investigator, and one meeting was held in
May 2009.
Additionally, specific experts were identified and con-
sulted with about specific issues. These experts included
both members (n = 9) and non-members (n = 11) of
advisory committees, and brought the same range of
expertise as the applicants described earlier. We refer to
the three advisory committees and the additional experts
collectively as advisors. The REFOCUS Study began in
May 2009, and recommendations made by advisors were
recorded until November 2009. All three committees
will however continue to operate until the end of the
study, with the IAB meeting annually and the Steering
Group and LEAP meetings biannually.
A recommendation was defined as a course of action
that was recommended by an expert or a committee as
advisable, and included both cognitive (i.e. to think
about something) and behavioural (i.e. to do something)
recommendations. All recommendations were recorded.
Slade et al.BMC Health Services Research 2010, 10:323
Page 2 of 9
Recommendations made in committee meetings or
afterwards by email as part of a committee follow-up
discussion were attributed to the committee. Recom-
mendations made in individual meetings or afterwards
by email were attributed to the individual expert (even
when they also were members of an advisory committee
but were contributing a recommendation outside of a
committee follow-up discussion thread). Each recom-
mendation was then discussed by the research team,
and a decision about implementation was recorded,
comprising either Implemented, Not implemented or
Undecided (when the recommendation related to a later
phase of the study, such as a reference to include in a
resulting publication). The rationale for the implementa-
tion decision was also recorded. The content of recom-
mendations was analysed to identify emergent themes
and sub-themes.
Advisors made 172 recommendations to inform the
study between May 2009 and November 2009. These
comprised 37 from IAB, 20 from LEAP, 36 from the
Steering Group, 9 from the social and cultural sub-
group, and 70 from 20 individual experts. The experts
comprised two IAB members (making 5 recommenda-
tions), seven Steering Group members (making 42
recommendations), and 11 non-members (making 23
Although there was some duplication of recommenda-
tions from different sources, there was no clear pattern
of overlap. The 172 recommendations were grouped
into five emergent themes, each with sub-themes,
shown in Table 1.
Examples of Scientific recommendations included
accessing an existing database (Design advice), involving
carers (Study extension), using video clips as a training
aid (Recommendation for intervention content), and to
consider the cyclical nature of recovery (Conceptual
suggestion). Examples of Pragmatic recommendations
included liaising closely with trial sites (Implementation
advice), revising the term manual(Recommendation
for language to use) and providing online information
about the study (Advice about dissemination). The
Resources recommendations identified publications or
other experts to access. Examples of Committee recom-
mendations included composition, terms of reference,
cross-committee representation and circulation of min-
utes, and clarity about role in decision-making in REFO-
CUS. An example of a Collaboration recommendation
about a Department of Health initiative on personalisa-
tion. Most recommendations were either strengthening
existing components or adding new components to the
study protocol. Very few recommendations either pro-
posed removing study components or contradicted
other recommendations.
The criteria for implementing recommendations were
not specified in advance, but discussions about imple-
mentation were observed by the research team to
involve three implementation criteria: scientific value;
pragmatic value; and paradigmatic consistency. One rea-
son not to implement the recommendations was where
Table 1 Recommendations made by advisory committees and experts
Recommendation theme Sub-theme IAB
Individual experts Total
1. Scientific 15 21 12 9 45 102
Design advice 11 14 8 7 33 73
Suggestion for a study extension 04 1 0 3 8
Recommendation for intervention content 31 1 0 4 9
Conceptual suggestion 01 2 2 4 9
Advice specific to PhDs 11 0 0 1 3
2. Pragmatic 6 1 1 0 2 10
Implementation advice 21 0 0 2 5
Recommendation for language to use 10 1 0 0 2
Advice about dissemination 30 0 0 0 3
3. Resources 11 8 0 0 19 38
Published work to consider 61 0 0 3 11
Unpublished work to consider 35 0 0 3 11
Expert person/group to contact 2 2 0 0 13 17
4. Collaboration Ongoing contact about specific issue 00 0 0 4 4
5. Committee Role and composition of committee 56 7 0 0 18
Total 37 36 20 9 70 172
International Advisory Board.
Steering Group.
Lived Experience Advisory Panel.
Social and Cultural sub-group.
Slade et al.BMC Health Services Research 2010, 10:323
Page 3 of 9
it added little or no scientific value, such as involving a
new advisor with the same expertise as an existing advi-
sor. The pragmatic criterion related to recommenda-
tions which did strengthen the current design but with
unmeetable cost (in time and money) implications for
the study, such as developing a new focus on social
capital interventions. Finally, recommendations were
sometimes not implemented on paradigmatic grounds
when the suggestion was reasonable from within an
alternative frame of reference but incompatible with the
goal of contributing evidence within the evidence-based
mental health paradigm [10]. For example, the term
manual(for the randomised controlled trial interven-
tion) was criticised since pro-recovery working is indivi-
dualised, but retained as the standard term used in
clinical practice. Overall, for recommendations to be
implemented they had to add scientific value, be viable
within the study resources, and be consistent with the
overall scientific framework being used.
The decision about implementation for these 172
recommendations is shown in Table 2. These are shown
in month order, to make visible any changes over time.
Most recommendations from committees were imple-
mented. For IAB, 6 (16%) recommendations were
not implemented, comprising 2 Scientific, 2 Pragmatic,
1 Committee and 1 Resources.ForLEAP,4(20%)were
not implemented (3 Scientific, 1 Pragmatic) and 3 (12%)
were undecided (3 Scientific). For the Steering Group, 5
(14%) were not implemented (3 Scientific, 1 Resources,
1 Committee) and 6 (17%) were undecided (6 Scientific).
For the social and cultural sub-group, 1 (11%) Scientific
recommendation was not implemented. Finally, 9 (13%)
recommendations from experts were not implemented
(6 Scientific, 3 Resources) and 35 (50%) undecided (22
Scientific, 10 Resources, 2 Pragmatic, 1 Collaboration).
The non-implementation proportion therefore range
from 11% to 20% across the different sources of advice.
The recommendations specifically relating to commit-
tees covered amendments to the terms of reference, new
members to invite, frequency of meetings, copying min-
utes between committees, joint meetings and cross-
committee representatives, and the role and impact of
public involvement.
The research team identified two benefits from the
advice. First, the overall research quality was (in the jud-
gement of the research team) improved, by considering
a broader range of issues. Second, there was greater
confidence that the research was both internationally
innovative and of a high methodological quality. The
costs identified by the research team (in addition to the
Table 2 Implementation of recommendations from advisory committee and experts
Recommendation Month 1 Month 2 Month 3 Month 4 Month 5 Month 6 Month 7 Total
1. Scientific n = 44 n = 0 n = 8 n = 20 n = 19 n = 8 n = 3 n = 102
Implemented 36 0 2 10 4 1 3 56
Not implemented 801330015
Undecided 0057127031
2. Pragmatic n=8 n=0 n=0 n=2 n=0 n=0 n=0 n=10
Implemented 50000005
Not implemented 30000003
Undecided 00020002
3. Resources n=18 n=0 n=9 n=4 n=6 n=0 n=1 n=38
Implemented 1603120123
Not implemented 20201005
Undecided 004330010
4. Collaboration n=0 n=0 n=2 n=0 n=0 n=1 n=1 n=4
Implemented 00100113
Not implemented 00000000
Undecided 00100001
5. Committee n=18 n=0 n=0 n=0 n=0 n=0 n=0 n=18
Implemented 1600000016
Not implemented 20000002
Undecided 00000000
Total n=88 n=0 n=19 n=26 n=25 n=9 n=5 n=172
Implemented 73 0 6 11 6 2 5 103
Not implemented 1503340025
Undecided 0 0 10 12 15 7 0 44
Slade et al.BMC Health Services Research 2010, 10:323
Page 4 of 9
financial costs in convening the committees) were the
increased demands on researchers to think through and
come to a view about each issue raised, the time taken
to revise the study protocol, and the consequent slower
progress in relation to study deadlines.
This observational study found three main results.
First, advisory committees and experts contributed to
the study in four ways: scientific advice relating to
design questions; pragmatic advice relating to maxi-
mising the likelihood of successful implementation and
dissemination; providing links to wider resources; and
offering opportunities for collaboration. A fifth cate-
gory of recommendations, on the composition and
processes of the advisory committees, did not contri-
bute to REFOCUS and accounted for 10% of the over-
all recommendations.
Second, 103 (60%) of the 172 recommendations were
implemented in order to improve scientific quality. The
wide range of recommendations presented challenges to
the research team. Three preliminary categories for
implementation criteriawere identified: scientific (is it
valuable?); pragmatic (is it possible?); and paradigmatic
(is it consistent?).
Third, it was helpful to record non-implemented
recommendations as a means of informing future
research. For example, as we discuss in the next section,
LEAP recommended a research focus on carers, which
was not implemented. Making this decision visible
ensures it is both more amenable to debate within the
study and can inform future research planning.
To our knowledge, this is the first study to attempt to
evaluate the contribution of advisory committees and
experts to a large health study. Its primary contribution
is therefore in generating hypotheses and preliminary
guidance for support structures for future research
Public involvement
The focus of the research was transforming mental
health services towards placing more importance on the
Therefore, the meaningful involvement of lived experi-
ence- the perspective of mental health service users or
carers - in the study was an important value. All advi-
sory committees contained people with lived experience,
but input from this perspective was obtained specifically
through LEAP.
Responding to LEAP recommendations was at times
challenging. In line with existing research on Public
Involvement [4], the overall impact on the research and
researchers was mixed. Several positive impacts have
been identified in previous studies, which were also
evident in our study. The study design was improved
through a closer match with the communitys needs and
interests [11]. The LEAP made the case for culture and
ethnicity to be a focus of the research, and this was
implemented through extending the study in a number
of ways. The phrasing of questions was improved [12].
LEAP identified that the planned approach to goal-
setting should be altered to allow people to change their
minds over time about their personal goals. The input
from LEAP also provided less tangible benefits, includ-
ing bringing energy and a sense of the study mattering
[13], fulfilling its role in being a critical friend by enhan-
cing awareness of implicit beliefs [14], and overall mak-
ing the process of the study more satisfying, even
enjoyable[15] (p. 14). A final intangible benefit for the
study was to challenge the idea that traditional meth-
odologies could be imported without problem to
researching recovery. Recovery-oriented research
requires the capacity to hold difference between per-
spectives as part of its process [16], in order to avoiding
over-simplified and formulaic conclusions about the
complex spectrum of recovery. In the study, these prin-
ciples had to be balanced against the scientific require-
ments to remain pragmatic about what can be
Some negative impacts found in other studies did not
feature in this study. The issue of control over the
research has been noted by others as a negative [17],
although we found that careful drafting of terms of
reference and the existence of positive pre-existing rela-
tionships greatly reduced this issue. Trust was built
through all parties demonstrating the willingness can
capacity to listen and respond to concerns raised. Public
involvement challenges researchersvalues and assump-
tions [18], but in this study that was an intended goal
and hence experienced as a positive rather than negative
The primary costs to the research team were Higher
demands on resources and a slower pace of research[4]
(p. 65). The need to invest time, energy and money into
supporting public involvement is well-documented
[19,20]. For example, the involvement of carers as
research participants was advocated by LEAP, and initi-
ally implemented by the research team (with time spent
drafting information sheets and consent forms, and
amending the protocol), before it became clear that the
resources needed to obtain high quality empirical evi-
dence would be disproportionate. This experience, con-
sistent with other studies [21], points to the need for
focussed research about carers and recovery. The
absence of a guiding theoretical framework for synthe-
sising multiple perspectives may have contributed to the
burden for the research team in responding to LEAP
Slade et al.BMC Health Services Research 2010, 10:323
Page 5 of 9
Although not a primary focus of this study, the experi-
ence from the perspective of LEAP membership was
also considered, and tensions were evident. Service users
and carers were asked to be involved in a research study
that sought to use quantitative methods, including a
randomised controlled trial, to investigate the experience
of recovery. This caused ambivalence for people asked
to join LEAP and to identify with REFOCUS, and some
felt that this approach to recovery - framing deeply per-
sonal experiences in quantitative terms - alienated them
from the recovery approach and the user values to
which they aspired. Lived experience presents a different
kind of value and a different kind of knowledge to that
of service ledknowledge [22], and questions were
raised whether insights arising from lived experience
were compatible with the positivist scientific paradigm
underpinning the research design [23]. Incorporating
lived experience perspectives often means that service
users invest emotional commitment to research, which
lends a different perspective to this process. For exam-
ple, evaluation of research by service users will have a
strong ethical investment, rather than solely being based
on positivist scientific principles of methodological
soundness. This underpinnedmuchoftheambivalence
about being identified with the study. Counter-balancing
this ambivalence, there was also recognition that bring-
ing lived experience into dialogue with the study offered
the potential to bring a different kind of knowledge.
Another motivator for involvement was the desire for
service delivery in the NHS to become focussed on sup-
porting individual recovery pathways. For those who did
choose to be involved, LEAP members reported that
REFOCUS sought to value their contribution and listen
to their concerns, which validated their involvement.
One mechanism to address concerns about tokenism
was to record recommendations and actions taken in
order to map the impact and influence of involvement
(thus producing the data on which this paper is based).
Limitations and future research
The study has at least five limitations. First, there was
no empirically-based guidance to inform the advisory
committee structure. The goal was to balance advice
from people with different forms of experience and
expertise, but this may not be optimal. It is plausible,
for example, that complex aspects such as lived experi-
ence require more people to improve the relevance of
the research than do less contested areas such as speci-
fic methodologies. Our development of a preliminary
taxonomy of types of contribution can inform future
empirically-based decision-making about the composi-
tion and structure of committees, including its member-
ship and its chair. For example, the PI for the study
chaired both the IAB and the steering group. This had
the advantages of allowing a consistent style of chairing
and ensuring that sensitive topics (e.g. about contentious
issues or due to local politics) were responded to appro-
priately, but the PIs professional orientation (e.g. clinical
background, methodological preferences) may have dis-
couraged particular types of recommendations.
Second, coding recommendations was problematic. It
was often difficult to differentiate between comments
and recommendations. The consensus within a commit-
tee about the recommendation was not recorded, and
nor was the strength of the recommendation. The con-
text of the recommendation was not recorded, so the
complexity of discussion was not captured. There was
no reliability or validity testing (e.g. using double rating)
for recording and coding recommendations. The metho-
dological rigour could be strengthened in a number of
ways. First, by the use of more structured approaches to
collecting and analysing the data. This could involve
recording and transcribing the committee meetings, and
then using a content analysis approach. For example,
the use of conversation analysis would provide informa-
tion about how recommendations come to be made
[24]. Second, methodology being developed by the Evi-
dence into Recommendationsgroup for Guideline
Development Groups (GDGs) could be incorporated
[25]. They propose a methodology to inform a frame-
work analysis to describe and explain incidents within
GDG meetings. Finally, the observational data could be
augmented with semi-structured interviews with key
stake-holders and focus groups to identify implicit
beliefs and processes.
Third, the process of deciding whether to implement
recommendations was not evaluated. Our categorisation
of recommendation themes and identification of three
implementation criteria (scientific value, pragmatic feasi-
bility, paradigmatic consistency) needs further operatio-
nalisation, and is based on data collected for only one
study so needs replication in other studies, but these
categories do provide a preliminary organising frame-
work to facilitate research.
Fourth, the optimal timing of committee composition
is unclear. In this study the focus has been on post-
funding recommendations from advisory committees,
and consistent with standard practice, these committees
were formed once the study was funded. There is evi-
dence of scientific benefits from public involvement ear-
lier in the process, when planning the overall design and
writing the research proposal [4]. Earlier involvement
from LEAP at the design and proposal stage would have
strengthened the REFOCUS Study, and reduced the
ambivalence about post-funding involvement expressed
by some lived experience researchers. This may of
course reduce the ability to evaluate the impact of pub-
lic involvement on the study. It is also plausible, though
Slade et al.BMC Health Services Research 2010, 10:323
Page 6 of 9
untested, that the earlier composition of advisory com-
mittees more generally (i.e. not just those supporting
public involvement) may add value. Earlier involvement
from the individual experts would have reduced the
number of post-funding recommendations, although this
needs to be set against the increased capacity of experts
to give time to a funded than a pre-funded study.
The final step towards an evidence-informed advisory
committee composition will be an evaluation of benefits
and costs which advisory committees bring to a study.
Finding the optimal balance between feasibility and
obtaining ongoing feedback from diverse perspectives is
problematic. It may not be feasible to use an experimen-
tal approach (such as random allocation of committee
types) to investigate the impact of committee structures
on large studies, since the challenges for each study are
complex and idiosyncratic. In particular, relationships
matter [26,27] - and the nature of the relationships and
the demonstrated willingness and capacity to listen may
be difficult to allocate to intervention sites. However, it
may be possible to rate the methodological quality of
study protocols before and after advisory committees
have contributed. This would provide some evidence of
the benefit accruing from advisors. Furthermore, positive
outcomes could be expected in terms of research quality
(measured by citation and impact factor metrics) and
impact (measured by influence on policy and practice)
[28]. Our study suggests that the costs to the research
team include time organising and attending committees
and responding to post-committee correspondence, cog-
nitive demands in responding to recommendations, and
emotional demands of managing relationships between
the study team and diverse stake-holders. All of these
types of cost are amenable to measurement.
More generally, it is clear from the implementation
science literature that several translational blocks can
occur between the development of research evidence
and practice change [29]. Research is now providing a
conceptual framework to understand these translational
gaps[30] and identifying approaches to improving
implementation [31]. The analogous challenge is addres-
sing advice gapsbetween experts and the research
team. Scientific enquiry into the optimal composition
and scope of advisory committees will involve the devel-
opment of taxonomies of types of recommendations and
reasons for implementation/non-implementation (a goal
to which this study contributes), and then observational
and experimental studies to understand how to maxi-
mise the benefits and minimise the costs of responding
to advice.
On the basis of our findings, we can make six recom-
mendations for other large studies.
First, have a clear rationale for each advisory commit-
tee. The rationale is best expressed as an agreed terms
of reference, and the discussion leading to agreement
can both help the committee to form and provide gui-
dance to shape future input. The terms of reference can
be informed by the five categories of contribution we
have identified. Consider carefully the balance between
involving experts through committee membership and
through individual consultation, whilst noting that com-
mittee members can also be consulted individually.
Second, an early concern of committees is inter-
committee communication. Our experience suggests
that copying of minutes between each committee should
be the norm, and that each committee should be offered
the opportunity to have representatives on the other
committees. Representation is both beneficial for the
study and experienced positively by the representatives.
Third, match the scope of advisory committees to the
study. We found that recommendations were adding
value, and did not in general contradict each other. This
suggests a comprehensive advisory committee structure
will improve the quality of decision-making for studies
which include a start-up phase during which final design
decisions or piloting are undertaken. However, for stu-
dies which have a relatively finalised design and need to
move rapidly to data collection, too much post-funding
advice can be a hindrance to progress, so the advisory
committee structure should be reduced at this stage
(while their value in the early design phase would be
Fourth, public involvement has a mixed impact. In our
study, which had a start-up phase, the impact was on
balance very positive. The main cost was time and pro-
gress, and the importance of this cost would increase in
studies with less start-up time.
Fifth, carefully consider the match between the scien-
tific paradigm applied in the study and the contribution
of different types of knowledge and expertise, and how
this will impact on possibilities for taking on advice.
Although there may not be an easy fit between for
example a positivist approach and knowledge arising
from lived experience, it may still be possible to take
important learning through careful facilitation and
mutual willingness to listen and learn. A concrete
approach to valuing different forms of knowledge is to
acknowledge and record the recommendations and
areas of scientific enquiry which, although potentially
desirable, cannot be addressed in the study.
Finally, responding to recommendations used up
research team resources. The burden on the research
team in responding to recommendations should be
minimised. The three decision-making criteria which
evolved over time were scientific, pragmatic and para-
digmatic. Using these criteria in other studies may
Slade et al.BMC Health Services Research 2010, 10:323
Page 7 of 9
reduce the cognitive and time costs on the research time
in responding to recommendations.
In conclusion, a complex health service research study
can require a large network of collaborators. This study
has shown that advisory committees can add scientific
value and maintain research integrity, has developed a
preliminary taxonomy for the types of contributions
they make, and has identified that there are also costs
involved for the research team. The optimal balance of
advice is unknown. On the one hand, the wide range of
advice has improved quality and relevance. On the
other, excessive consultative input can become unhelpful
if it inadvertently places too much pressure on the time
and resources of the research team to respond to it. The
tipping point between too little and too much advice is
unclear. Our finding that recommendations should be
implemented when they are valuable, possible and con-
sistent provides a potential framework for future investi-
gation. This study is a contribution to an area of
research management which is both important and
We are very grateful to the many advisors and researchers who have
contributed to this study. The study was independent research
commissioned through an NIHR Programme Grant for Applied Research
(grant RP-PG-0707-10040), and in relation to the NIHR Specialist Mental
Health Biomedical Research Centre at the Institute of Psychiatry, Kings
College London and the South London and Maudsley NHS Foundation
Trust. The views expressed in this publication are those of the authors and
not necessarily those of the NHS, the NIHR or the Department of Health.
Author details
Health Service and Population Research Department, Kings College
London, Institute of Psychiatry, Denmark Hill, London SE5 8AF, UK.
User and Carer Involvement Coordinator in Research and Development,
Sussex Partnership NHS Foundation Trust, Portsmouth, UK.
Department of
Social and Social Policy, Anglia Ruskin University, East Road, Cambridge CB1
1PT, UK.
Rethink, 89 Albert Embankment, London SE1 7TP, UK.
Institute of
Applied Social Studies, University of Birmingham, Edgbaston, Birmingham
B15 2TT, UK.
MS conceived of the study, oversaw the data collection, and drafted the
manuscript. ML and VB recorded the data and contributed to the design
and analysis. RC, JF, JL and JT contributed to the design and the
interpretation of findings. All authors read, commented on and approved
the final manuscript.
The study took place in the context of a broader programme of research
into personal recovery, described at
Competing interests
The authors declare that they have no competing interests.
Received: 2 July 2010 Accepted: 2 December 2010
Published: 2 December 2010
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Slade et al.BMC Health Services Research 2010, 10:323
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... Despite a general interest in engaging with research [31][32][33], considerable effort was still needed to build and maintain trusting relationships with practice stakeholders, as has been reported with other PCORI-funded projects [34]. Consistent with other reports [16], the process required more time than expected and ongoing engagement efforts were essential, especially given frequent staff turnover at maternity care practices. ...
... The active participation of these stakeholders helped the research team gain perspective on the vulnerabilities of the study population and provided important oversight on study activities to ensure that the research was not burdensome or harmful for participants. The stakeholders provided continuous input, resulting in many types of recommendations, most of which were implemented by the research team, as discussed above and as shown in other studies [34]. ...
Aim: Community stakeholder engagement in research (CSER) can improve research relevance and efficiency as well as prevent harmful practices, particularly for vulnerable populations. Despite potential benefits, researchers lack familiarity with CSER methods. Methods: We describe CSER strategies used across the research continuum, including proposal development, study planning and the first years of a comparative effectiveness study of care for pregnant women with opioid use disorder. Results: We highlight successful strategies, grounded in principles of engagement, to establish and maintain stakeholder relationships, foster bidirectional communication and trust and support active participation of women with opioid use disorder in the research process. Conclusion: CSER methods support research with a disenfranchised population. Future work will evaluate the impact of CSER strategies on study outcomes and dissemination.
... Advisory boards and committees have constituted an effective way to involve PWLE and practitioners in mental health research (e.g. [39,46], and more particularly in the field of dementia [21,57] and forensic mental health [3]. Yet, there is limited guidance on the process of establishing, retaining, and using advisory board structures (an example coming from HIV prevention and treatment research, [54]. ...
Full-text available
Background The use of participatory research approaches in the field of dementia and forensic mental health research has been on the rise. Advisory board structures, involving people with lived experience (PWLE), have frequently been used for guiding and leading research. Yet, there has been limited guidance on the establishment, retention and use of advisory boards in the field of dementia and forensic mental health research. Objective This project outlined in this research protocol will investigate the benefits and challenges of establishing three patient advisory boards, involving PWLE, practitioners and researchers with the purpose to guide research. Data will be used to develop guidelines for best practice in involving PWLE in dementia and forensic mental health research through advisory boards. Methods The research project will be divided into three phases: Phase I will involve two topic-specific systematic reviews on the use of participatory research with PWLE, followed by an initial study exploring PWLE’s, practitioners’ and researchers’ expectations on research involvement. Phase II will consist of the establishment of three advisory boards, one focusing on dementia, one on forensic mental health and one overarching coordinating advisory board, which will involve PWLE from both fields. Phase III, will consist of interviews and focus groups with advisory board members, exploring any challenges and benefits of involving PWLE and practitioners in advisory boards for guiding research. To capture the impact of involving PWLE in different research phases and tasks, interviews and focus groups will be conducted at four different points of time (0, 6, 12, 18 months). Reflexive thematic analysis will be used for the analysis of data. Discussion The project aims to explore the involvement of PWLE and practitioners in guiding research and aims to develop guidelines for best practice in establishing and using patient advisory boards in dementia and forensic mental health research and involving PWLE and practitioners in research.
... There is an Academic Advisory Board for the project which covers all sites. The Boards exist to provide a forum for discussion, feedback, oversight, guidance, meaningful involvement and independent advice to support the integrity and value of the research, following best practice [55]. ...
Full-text available
Background Globally, the most important human rights and public health issue that sex workers face is their experience of high levels of violence (Kinnell, 2006, Kinnell, 2008, Alexander, 1999). Deering’s systematic review estimated levels of sexual violence in sex working populations as being between 14% and 54% (Deering et al, 2014). Aims This international, robust mixed methods study will explore the frequency of sexual violence against sex workers, barriers in criminal justice and the legal consciousness of sex workers regarding their rights and consent. The hypothesis to be tested is that the safety of sex workers from sexual violence is mediated by the differing legal contexts of sex work environments. We will compare experiences across research sites in the context of legalisation (Nevada USA), client criminalisation (Northern Ireland), decriminalisation (New Zealand) and partial criminalisation (England, Scotland and Wales) [henceforth ESW]. Methods An international survey (n = 1,000) will be translated into several languages, to disaggregate experiences by demographic categories (gender, ethnicity, sexual orientation) and sex work sector (including online, street-based and brothels). Interviews (n = 100) with sex workers, police, prosecutors and service providers will be thematically analysed to explore legal consciousness, why the patterns occur and contextualise the statistical findings. These data will be supplemented with comparative legislative, policy and case analysis. Research study data will be used to compare the social factors and legal norms shaping sex workers experiences of sexual violence, justice and support interventions. Recommendations for a ‘best practice’ review of legal improvements and support interventions will be produced following completion of the study. Given the sensitive nature of the research, robust ethical and data protection mechanisms are in place. The research has ethical approval from each research site, an Advisory Board and trained, paid peer researchers to assist with data gathering, analysis and dissemination. The study will report findings in 2023/2024.
... promote service user involvement in the development of mental health policy and intervention. Lived Experience Advisory Panels, user-led Theatre Groups, and Community Action Groups are a few examples of such platforms(50,51). Since the last report, there has been a signi cant increase in the number of government-run and private NGOs working toward the provision of mental health care within their communities.Domain 5: Public Education and Links with Other SectorsIn Pakistan, there is no centralized coordinating body to oversee public education and awareness campaigns on mental health and mental disorders(12). ...
Full-text available
Background: Pakistan is confronted with significant mental health challenges, which necessitate the urgent need for a comprehensive assessment of its mental healthcare system. A holistic understanding of the mental health landscape is essential to identify strengths, weaknesses, and existing gaps within the system, which can inform targeted interventions and policy enhancements to improve mental healthcare delivery and accessibility. Objective: The primary objective of this study is to conduct an in-depth analysis of Pakistan's mental healthcare system across various dimensions, guided by the World Health Organization's Assessment Tool for Mental Health Systems (WHO-AIMS). Methods: Data for this study wereobtained through desk research, including an examination of existing policies and legislation, and consultations with various health facilities across Pakistan. This comprehensive analysis focused on six domains within the WHO-AIMS framework: (1) policy and legislation, (2) mental health services, (3) integration of mental health into primary care, (4) public awareness and collaboration with other sectors, (5) human resources, and (6) monitoring and research initiatives. Results: The findings from our analysis revealed valuable insights within the six domains. We identified areas of strength and opportunities for improvement in Pakistan's mental healthcare system. These insights serve as the foundation for revising and updating national priorities for mental healthcare delivery and advocacy efforts. Key areas of focus include enhancing policy and legislation, expanding access to mental health services, improving existing initiatives for better integration of mental health into primary care, improving public awareness and public-private partnership, addressing human resource challenges, and strengthening monitoring and research initiatives. Conclusion: This study provides a roadmap for refining and enhancing Pakistan's mental health ecosystem and informs the prioritization of mental health campaigning efforts. Ultimately, our study contributes to ongoing efforts to improve mental healthcare accessibility and quality in Pakistan.
... 3 Even if you are sympathetic to the value of experiential knowledge and would agree that instances like those Rose and Kalathil describe are harmful and ought not to constitute the way research is done, you may also agree that present research hierarchies tend to privilege the quantitative or the 'evidence-based' as opposed to the qualitative or narrative kinds of knowledge (Crichton, Carel, and Kidd, 2017). 'Lay' research members (those who are often invited on the basis of their lived experience) are simply not afforded the power or control of research that would allow them to influence research's direction, or to challenge chosen methodologies such that their contributions 'count' in meaningful ways (Slade et al., 2010). Methods that are viewed as value-free and objective remain privileged over and above subjective or first-hand accounts of distress or service use (Faulkner, 2017). ...
Co-production, in the field of mental health, aims to bring together academic and clinical researchers and those with lived experience. Often, research projects informed by this methodology involve the meeting of opposing attitudes, whether to the legitimacy of psychiatry, determinants of mental ill health, or the most appropriate interventions. This has meant that whilst some have reported positive experiences of co-production, many people with lived experience of mental ill health, sometimes referred to as ‘experts by experience’ (EbE), report harms which have taken place or been perpetuated during co-produced research projects. In the literature, nearly always, this is understood as a kind of epistemic injustice in Miranda Fricker's sense. In this paper, I argue that whilst Fricker's view does provide a plausible explanation of what's at play, we can gain more insight into the structural factors which exclude EbE by applying a framework of epistemic oppression. By highlighting the systemic and structural factors which work to keep certain knowers and their contributions out of our collective epistemic resources, we begin to understand the enormity of the task required to redress injustices in our knowledge production systems.
... Aware of the pivotal role played by advisory committees in programme implementation (Slade et al., 2010), a robust programme management and governance for ARISE was established. At the helm of ARISE programme implementation is a Scientific Advisory Committee (SAC) comprised of renown scholars drawn from Africa and Europe. ...
Through an ambitious development blueprint called Agenda 2063, Africa is on a mission to creating the ‘Africa We Want’ by the year 2063, centred on science, technology, and innovation. While the 2063 development agenda portends attainment of socio-economic development and prosperity in Africa, it brings with it an enormous need for strategic investment in research to ensure that no one is left behind. This paper presents insights from the African Research Initiative for Scientific Excellence (ARISE) programme on inclusive research capacity strengthening investment in Africa. The insights are drawn from a comprehensive candidate selection process for ARISE, from which 45 researchers (from a pool of 929 applicants) are recruited for ARISE Fellowships. The 45 early-to-mid-career researchers, 37% of which are women, are hosted in 45 institutions of higher learning located in 38 countries across Africa, conducting 5-year research fellowships with grants of up to €500,000 each. The insights from the ARISE programme contribute to the debate on effective approaches to programme scoping, design, and delivery, underscoring the need for consideration of scientific excellence in the context of diversity in research support capacity and investments across Africa.
... The findings from our study add to the discussion on SRH needs by establishing that advisory groups, specifically those including immigrant adolescents, contribute to research development in a profound way. Most notably, they are able to provide valuable insight relating to questionnaire design, practical advice on successful implementation procedures that will increase the likelihood of reaching their demographic and encourage opportunities for future collaboration (28). Given that the body of literature on the involvement of immigrant adolescents as collaborators in research is quite lacking, this study acts as a pivotal, foundational piece of literature. ...
Full-text available
Background Despite the growing evidence supporting the benefit of engaging adolescents in research, the active engagement of immigrant adolescents in research is limited. Further, when exploring the sexual and reproductive health (SRH) needs of immigrant adolescents, utilization of adolescent advisory groups is finite. This study aimed to train and evaluate engagement of an adolescent advisory group (AAG) to inform SRH needs of immigrant adolescents in Canada.Methods Using purposive sampling, 13 AAG members were recruited into this study. Members were trained in content related to SRH needs of adolescents and various research methodologies such as conducting a scoping review and qualitative interviews with adolescent participants. After 10 months of member engagement, their experiences were evaluated to identify areas of success and areas for improvement. These data were collected using the Public and Patient Engagement Evaluation Tool, which consisted of a Likert survey and open-ended questions, and analyzed in accordance to the Patient Engagement in Research (PEIR) framework.FindingsTen members completed the evaluation survey. Likert survey responses were primarily positive. Majority of members showed positive demonstrations regarding various components of the PEIR framework, including contributions, support, research environment, and feeling valued.Conclusion Findings illustrated that immigrant AAGs are constructive to informing SRH research. Not only can research teams benefit, but members are also empowered. This study provided the foundation for future immigrant adolescent engagement in research and knowledge translation, and effective means of evaluating engagement by utilizing the PEIR framework.
... The recognition that the metrics need to be meaningful for all stakeholders underlines the importance of tailoring M&E to enhance impact. Some of the selected metrics are in line with other studies, such as preparedness, 17 diversity of patients, 34 the recommendations (not) implemented and why, 35 and the changes in research questions and design. 36 These metrics might be applicable to patient engagement initiatives in various contexts. ...
Full-text available
Purpose: While patient engagement is becoming more customary in developing health products, its monitoring and evaluation to understand processes and enhance impact are challenging. This article describes a patient engagement monitoring and evaluation (PEME) framework, co-created and tailored to the context of community advisory boards (CABs) for rare diseases in Europe. It can be used to stimulate learning and evaluate impacts of engagement activities. Methods: A participatory approach was used in which data collection and analysis were iterative. The process was based on the principles of interactive learning and action and guided by the PEME framework. Data were collected via document analysis, reflection sessions, a questionnaire, and a workshop. Results: The tailored framework consists of a theory of change model with metrics explaining how CABs can reach their objectives. Of 61 identified metrics, 17 metrics for monitoring the patient engagement process and short-term outcomes were selected, and a “menu” for evaluating long-term impacts was created. Example metrics include “Industry representatives’ understanding of patients’ unmet needs;” “Feeling of trust between stakeholders;” and “Feeling of preparedness.” “Alignment of research programs with patients’ needs” was the highest-ranked metric for long-term impact. Conclusions: Findings suggest that process and short-term outcome metrics could be standardized across CABs, whereas long-term impact metrics may need to be tailored to the collaboration from a proposed menu. Accordingly, we recommend that others adapt and refine the PEME framework as appropriate. The next steps include implementing and testing the evaluation framework to stimulate learning and share impacts.
This chapter picks up on the last one giving a more elaborated account of how ‘experience’ functions as a foundational category for Mad Knowledge. It causes difficulties that ‘experience’ is also an everyday word. Both the non-survivor and survivor literature will be addressed and they are different. I take issue with the idea that ‘individual experience’ is the root element from which collective experience develops, arguing that knowledge is always already collective. Its epistemic difference from empirical science is discussed and how the two fit together is addressed.
Full-text available
Background The role of patient involvement in health research has evolved over the past decade. Despite efforts to engage patients as partners, the role is not well understood. We undertook this review to understand the engagement practices of patients who assume roles as partners in health research. Methods Using a recognized methodological approach, two academic databases (MEDLINE and EMBASE) and grey literature sources were searched. Findings were organized into one of the three higher levels of engagement, described by the Patient and Researcher Engagement framework developed by Manafo. We examined and quantified the supportive strategies used during involvement, used thematic analysis as described by Braun and Clarke and themed the purpose of engagement, and categorized the reported outcomes according to the CIHR Engagement Framework. Results Out of 6621 records, 119 sources were included in the review. Thematic analysis of the purpose of engagement revealed five themes: documenting and advancing PPI, relevance of research, co-building, capacity building and impact on research. Improved research design was the most common reported outcome and the most common role for patient partners was as members of the research team, and the most commonly used strategy to support involvement was by meetings. Conclusion The evidence collected during this review advanced our understanding of the engagement of patients as research partners. As patient involvement becomes more mainstream, this knowledge will aid researchers and policy-makers in the development of approaches and tools to support engagement. Patient/User Involvement Patients led and conducted the grey literature search, including the synthesis and interpretation of the findings.
Full-text available
[⇓][1] ![Figure][2] If you do not know what a Golden Ducky Award is then by the end of this book you will. This guide focuses on severe mental illness and provides an up-to-date argument for why mental health services should focus on personal recovery. In the UK, government policy over
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Background Self-harm is the term used to describe the action of a person who deliberately and physically harms themselves. There are many ways in which people harm themselves, but the most common ways are taking overdoses of tablets or medicines (self-poisoning), and cutting or burning themselves (self-injury). Self-harm is associated with serious mental distress and a significant risk of suicide. Every year, there are approximately 3500 attendances at Emergency Departments in Leeds following an episode of self-harm. Since many people harm themselves more than once, around 2200 people account for these attendances. The recent NICE self-harm guidelines identified Emergency Departments as central to the care of people who self-harm: an effective intervention delivered there has the potential to reduce the impact and frequency of episodes of self-harming. Some service user groups have called for an advocacy service in Emergency Departments believing that this will substantially improve the care of people who self-harm. Advocacy means speaking on behalf of another person or supporting them to speak for themselves. In general, advocacy services aim to support people who need assistance to represent their interests, secure their rights and obtain services. The aims of the study This study was conducted in Leeds. It aimed to provide two things: 1) stakeholder views on a potential advocacy service in the Emergency Department and 2) practical information and recommendations to facilitate a pilot service. A secondary aim was to identify other ways in which to develop and improve local services for people who self-harm. Methods (the way that the study was carried out) The project team included three members with personal experience of self-harm. The team interviewed members from four stakeholder groups: people who had recently attended an Emergency Department in Leeds following self-harm (service users), Emergency Department staff, mental health staff and mental health advocates. Interviewees were asked about their experiences of receiving or delivering services for self-harm, their views about the acceptability and feasibility of advocacy in the Emergency Department, and for other ways to improves services. This report presents and discusses the responses of 23 services users, eight mental health staff, seven Emergency Department staff and five mental health advocates. Findings i) A number of points arising from the interviews suggested that that advocacy at the Emergency Department might be beneficial; they were: • Feelings of isolation. Advocates and some staff recognised that the Emergency Department can be a lonely, isolating and even frightening place for many people who self-harm. Most service users would have preferred to have been accompanied by a friend or supportive person but more than half were unaccompanied. • Experiences of communication with staff. In general, service users who were accompanied to the Emergency Department held more positive views about their interactions with staff. Service users who had experienced negative staff attitudes at the Emergency Department believed that these attitudes impacted on self-esteem and could exacerbate self-harming or non-attendance for treatment following future episodes. • Support with obtaining medical care. Although most service users were not critical of the medical care they received, a number of people attending following self-injury felt they had not received proper care for their wounds before discharge. It was thought that being accompanied would help prevent this happening. • Dissatisfaction and inconsistencies around admissions to an Emergency Department ward and referral to the Self-Harm Team. Some people who would have liked contact with mental health services did not receive this because they were not admitted to a ward. Some others who would have preferred to see a mental health professional while they were in the department had to stay overnight which they found unhelpful in their current emotional state. Preferences may have not been expressed or may have been overruled by staff. • Apparent inconsistencies in the treatment of people who have attended previously for self-harm. Staff said that they felt frustrated and unable to help many people who attended ‘repeatedly’. It was acknowledged that these individuals may not always be treated in the same way as those attending for the first time. People who had attended previously were least likely to be accompanied and least likely to say they were referred to the Self-Harm Team. Dissatisfaction with both the medical and mental health care was most likely in those people who had self-harmed previously and who had self-injured. • Lack of mental health skills in Emergency Department staff. Many service users do not have contact with mental health professionals until they are nearing the end of their stay in the department. Many medical staff said they lacked the confidence and skills to deal effectively and sensitively with people with mental health problems. It was believed that an advocate skilled in mental health issues would help provide appropriate support during the service users’ time in the Emergency Department. • Dissatisfaction with aftercare arrangements. Many service users left the Emergency Department without robust aftercare plans. This may be due to service users having difficulty expressing their wishes, or lacking the confidence or ability to negotiate their aftercare at the time of discharge. Service users often lack knowledge about what services might be available and so cannot ask for referral. • Service constraints. The introduction of the ‘four-hour rule’ may influence the behaviour of staff as they try to meet government targets. Staff may be less likely to take into account the preferences of individual service users as they attempt to provide efficient care. Mental health staff reported being asked to conduct psychosocial assessments with people who they felt were not physically or mentally ‘ready’. Desirability of a potential advocacy service was dependent on the way in which each person understood advocacy and their expectations of a potential advocate. Trying to establish whether advocacy would be beneficial in the Emergency Department or not was complicated by the fact that both between and within the groups interviewed, different views existed about what an advocate is and about what they should do. The key roles for advocates that were agreed by all stakeholders were as follows. • An independent person to be ‘on the side of’ service users to speak up for, or support, their requests and preferences. • Someone to improve communication between service users and staff. • Someone to help negotiate an effective aftercare plan with mental health staff, and support service users in the implementation of this plan. Service users in general felt that they would benefit by having independent support from an advocate during their time in hospital. Staff and mental health advocates also recognised that many service users would benefit from individual support during their visit to hospital. ii) Important practical considerations for the development of an advocacy service were identified. Role definition The advocate ‘job description’ must be defined early on in the development of any service. This job description needs to be informed by those who are experts in advocacy but also by the views of other stakeholders in order to negotiate a shared acceptable definition that meets the needs of service users. Accessibility of the service A pilot service should cover the ‘peak period’ of attendance for self-harm (between 6pm and 2am) with the aim of identifying resources required for a 24-hour service (considered the ‘ideal’ by most participants). Independence Because of concerns about the independence of advocates, the service should not be based in the Emergency Department but part of an existing mental health advocacy service. Advocates must have supervision and support structures that are independent of Emergency Department services. These would preferably be provided by an independent mental health advocacy service. Initial contact with an advocate The offer of an advocate should be made as soon as possible after the person has presented at the Emergency Department. However, for some service users this might not be the best time to offer and explain advocacy so initial contact should be flexible. Employment of advocates Recruitment procedures should ensure that the advocates have the correct balance of skills and experience. Mental health advocacy groups should be involved in the development of recruitment procedures. Given the preference for a female advocate expressed by the women service users we interviewed, any service must have women employees available. Advocates should be paid employees rather then volunteers. Advocacy training A comprehensive training package for advocates should be developed and delivered by a mental health advocacy group. Training should include input from those with personal experience of attending Emergency Departments for self-harm and health professionals. iii) As well as potential benefits, some interviewees (especially mental health staff and mental health advocates) had reservations or concerns about an Emergency Department centred advocacy service for self-harm. • There was concern that if referral to the advocacy service was dependent on Emergency Department staff there may be prejudicial ‘gate-keeping’ to advocacy services and lack of time spent getting informed consent before referral. • There was concern that service users might have to wait a long time for an advocate, extending the time spent in the Emergency Department. • Some advocates felt that people in an emotional crisis may not be able to usefully instruct an advocate or give informed consent regarding the passing on of confidential information. • Mental health staff and advocates were concerned that offering advocacy in the Emergency Department only for self-harm would be inequitable and may be impractical. • There was a concern that advocacy would not address the bigger issues of staff attitudes towards self-harm. Recommendations We recommend that Leeds Social Services consider the provision of a crisis support or advocacy service in the Emergency Department for people who self-harm. Such a service would help meet the key needs identified by service users, which were 1) support with the expression and implementation of preferences about care, 2) reduction of isolation during the hospital visit and 3) providing information about other services. An essential part of this role would be support or advocacy for the service user at the time of discharge from hospital to ensure that aftercare arrangements were acceptable and robust. In addition, we make a number of other recommendations for the improvement of services: Service User Development Workers In collaboration with the Teaching Hospital Trusts, Leeds Mental Health Trust should investigate the feasibility of employing a Service User Development Worker (SUDW) as part of the liaison psychiatry team. Currently SUDWs only work in the mental health hospital and community settings. Training Emergency Department staff should attend training to improve their understanding of self-harm and their ability to deal confidently and sensitively with people with mental health difficulties. Training should receive input from survivors/service users so that staff can improve their understanding of the service user’s perspective, the potential impact of a negative experience at the Emergency Department and the possibility of recovery. Privacy and respect Consideration should be given to how privacy can be improved for people who self-harm during the initial assessment and mental health assessment without risking the safety of staff. However, care must also be taken not to increase the isolation of service users and leaving service users alone for extended periods of time in a cubicle or side-room should be avoided. Staff training should address the importance of showing respect for a person’s privacy even where environmental constraints prevent complete confidentiality. Essentially, this means staff being aware that people can be overheard in most places within the hospital and recognising the need to discuss sensitive issues in ways to minimise this. Information Information about the Emergency Department process should be communicated in a sensitive and timely fashion as the emotional state of the person attending the department may be such that they cannot absorb or remember large amounts of information at once. Service user/survivor groups should work with mental health workers (statutory and non-statutory) and Emergency Department staff to develop a pack of information materials in a format suitable to be distributed or situated at the Leeds Emergency Departments. Any ‘information pack’ must be updated on a regular basis (at least yearly) and an evaluation of the uptake and effectiveness of the information pack should be conducted. Protocols and guidelines Protocols and guidelines should be reviewed so that referral to the Self-Harm Team is not dependent on admission to an Emergency Department ward. Emergency Department and Mental Health staff should review existing protocols and clarify ‘grey’ areas about referral and risk. Guidelines for working consistently with people who self-injure, and/or attend frequently in the Emergency Department should be developed in collaboration with mental health staff and service user representatives. Discharge and follow up All those who attend an Emergency Department following self-harm should be contacted within two days of discharge and offered a follow up appointment (preferably with a member of the Self-Harm Team).
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Has Mrs A got schizophrenia? Would Mr B do better with a tricyclic or a selective serotonin reuptake inhibitor? Is Miss C likely to be recovered in six months time? Is St John's wort an effective antidepressant? Clinical psychiatry involves making difficult decisions about diagnosis, therapy and prognosis. Sometimes we may be entirely confident about our decisions, but often we are uncomfortably aware that we are making a choice without being sure there is convincing evidence to justify it. Maybe we don't know or have forgotten what the evidence is, or perhaps there isn't any.
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Background: Little is known about the preferences and experiences of people with mental illness in relation to residential alternatives to hospital. Aims: To explore patients' subjective experiences of traditional hospital services and residential alternatives to hospital. Method: In-depth interviews were conducted with 40 purposively selected patients in residential alternative services who had previously experienced hospital in-patient stays. Transcripts were coded and analysed for thematic content. Results: Patients reported an overall preference for residential alternatives. These were identified as treating patients with lower levels of disturbance, being safer, having more freedom and decreased coercion, and having less paternalistic staff compared with traditional in-patient services. However, patients identified no substantial difference between their relationships with staff overall and the care provided between the two types of services. Conclusions: For patients who have acute mental illness but lower levels of disturbance, residential alternatives offer a preferable environment to traditional hospital services: they minimise coercion and maximise freedom, safety and opportunities for peer support.
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In this article, the authors consider the lessons to be drawn from a collaborative two-year research project involving academic researchers working alongside three service user research organisations. The joint working on the project involved designing a research tool and conducting interviews with users of services that were provided by health and social services partnerships. Questions arising from this project involved consideration of the advantages and challenges of collaborative work. Our experience has highlighted the necessity of carefully considering a range of factors, including the ethos and goals of each organisation, as well as the skills and experience of the individuals involved, in relation to the specific purpose of the research. The challenge for academic researchers is to find ways to meet a range of research aims and objectives, while negotiating roles in ways that avoid reinforcing power relations and disempowering service user researchers. Alongside consideration of the challenges involved, this reflective account also highlights some of the advantages of working with user researchers, and suggests ways of harnessing the enthusiasm and skills of service users, with the aim of capturing the unique perspective they bring to research.
Recovery is a concept which has emerged from the experiences of people with mental illness. It involves a shift away from traditional clinical preoccupations such as managing risk and avoiding relapse, towards new priorities of supporting the person in working towards their own goals and taking responsibility for their own life. This book sets an agenda for mental health services internationally, by converting these ideas of recovery into an action plan for professionals. The underlying principles are explored, and five reasons identified for why supporting recovery should be the primary goal. A new conceptual basis for mental health services is described-The Personal Recovery Framework - which gives primacy to the person over the illness, and identifies the contribution of personal and social identity to recovery. These are brought to life through twenty-six case studies from around the world.
Objective To describe the ways in which members of the public with a chronic condition were involved as advisors in a research project exploring pharmacist supplementary prescribing. The primary objective was to be able to reflect upon the benefits and difficulties of this approach so that the patient perspective can be accommodated more fully in future research. Setting University of Bath. Method Ten individuals were recruited from two clinical areas: a diabetes support group and a chronic lung disease group. None of the individuals had ever seen, or heard of, a pharmacist supplementary prescriber. They joined two members of the research team at each of six meetings held over a period of one year. This paper presents an ethnographic approach to the accounts of these meetings and reflects on the involvement of patients as members of the research team. Key findings Initially, the group was unaware of pharmacist prescribing and expressed a range of concerns. After gaining an understanding of pharmacist prescribing, they were able to influence the design and content of interview schedules and offered comments on completed interview transcripts. As the project progressed the patients began to take on a non-lay perspective of pharmacists, becoming more in favour of pharmacist prescribing over time. It may be useful in the future to introduce new patient members to such a group, from time to time, during the life of a project to maintain a lay or ‘outside’ perspective on key research issues. Nonetheless, the use of the patient group contributed to the direction and outcome of the study in a positive way and kept the project grounded in the patient's perspective. Conclusion We conclude that the benefits of including patients in the research process far outweigh the difficulties. Researchers are encouraged to adopt this approach in the future and listen to the patients but be clear about their role in the research process.