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User-led research and evidence-based medicine

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Alison Faulkner at City, University of London
Alison Faulkner
Philip Thomas at Formerly University of Central Lancashire
Philip Thomas
  • Formerly University of Central Lancashire
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Abstract

Evidence-based medicine (EBM) and clinical governance play a central role in raising the quality of medical care. People want clinical decisions to be based on the best evidence and EBM places scientific knowledge in the service of clinical decision-making. Yet a quite different agenda is engaging patients as partners in health research, to make the medical profession more accountable. Here, we examine the epistemological basis of EBM, and the ethical concerns raised by this. In particular, we examine the value of user-led research in psychiatry in improving the concept of ‘evidence’ in evidence-based psychiatry.
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Evidence-based medicine (EBM) and clinicalEvidence-based medicine (EBM) and clinical
governance play a central role in raising thegovernance play a central role in raising the
quality of medical care. People want clinicalquality of medical care. People want clinical
decisions to be based on the best evidencedecisions to be based on the best evidence
and EBM places scientific knowledge inand EBM places scientific knowledge in
the service of clinical decision-making. Yetthe service of clinical decision-making. Yet
a quite different agenda is engaging patientsa quite different agenda is engaging patients
as partners in health research, to make theas partners in health research, to make the
medical profession more accountable. Here,medical profession more accountable. Here,
we examine the epistemological basis ofwe examine the epistemological basis of
EBM, and the ethical concerns raised byEBM, and the ethical concerns raised by
this. In particular, we examine the value ofthis. In particular, we examine the value of
user-led research in psychiatry in improvinguser-led research in psychiatry in improving
the concept of `evidence' in evidence-basedthe concept of `evidence' in evidence-based
psychiatry.psychiatry.
MODERNISM AND EBMMODERNISM AND EBM
Medicine is now practised in a post-modernMedicine is now practised in a post-modern
context that potentially conflicts with thecontext that potentially conflicts with the
modernist agenda of EBM. Although post-modernist agenda of EBM. Although post-
modernism does not mean rejectingmodernism does not mean rejecting
modernism, it does mean that we shouldmodernism, it does mean that we should
acknowledge modernism's drawbacks asacknowledge modernism's drawbacks as
well as its benefits. Modernism originatedwell as its benefits. Modernism originated
in the European Enlightenment with thein the European Enlightenment with the
quest for a self-evident truth free fromquest for a self-evident truth free from
doubt. The path to truth and knowledgedoubt. The path to truth and knowledge
was to be via science and rationality. Mostwas to be via science and rationality. Most
historical accounts of psychiatry trace itshistorical accounts of psychiatry trace its
origins back to the Enlightenment (Brackenorigins back to the Enlightenment (Bracken
& Thomas, 2001), with the subsequent& Thomas, 2001), with the subsequent
sequestration of the insane in the asylums.sequestration of the insane in the asylums.
As a result, madness came to be accountedAs a result, madness came to be accounted
for by the scientific and rational narra-for by the scientific and rational narra-
tives of psychiatry, through the medicaltives of psychiatry, through the medical
technologies of diagnosis and treatment.technologies of diagnosis and treatment.
A rational, scientific approach to thera-A rational, scientific approach to thera-
peutic decision-making lies at the core ofpeutic decision-making lies at the core of
EBM. Hodgkin (1996) sees EBM as a mod-EBM. Hodgkin (1996) sees EBM as a mod-
ernist backlash against post-modernism inernist backlash against post-modernism in
medicine, because it represents the mod-medicine, because it represents the mod-
ernist belief that treatment decisions canernist belief that treatment decisions can
be based on an objective understanding ofbe based on an objective understanding of
a universal reality. Laugharne (1999) alsoa universal reality. Laugharne (1999) also
argues that the underlying philosophy ofargues that the underlying philosophy of
EBM is modernist, because it assumesEBM is modernist, because it assumes
that medical interventions always can bethat medical interventions always can be
rational and measurable. Although EBMrational and measurable. Although EBM
may be valuable in discriminating betweenmay be valuable in discriminating between
the claims made by advocates of differentthe claims made by advocates of different
treatments, patients are left feeling thattreatments, patients are left feeling that
their concerns are forgotten and that theytheir concerns are forgotten and that they
are little more than a disease being treated.are little more than a disease being treated.
There are two possible ways forward. TheThere are two possible ways forward. The
first involves a debate about the values,first involves a debate about the values,
power and assumptions that underlie psy-power and assumptions that underlie psy-
chiatric knowledge ± what we have framedchiatric knowledge ± what we have framed
as ``ethics before effectiveness'' (Bracken &as ``ethics before effectiveness'' (Bracken &
Thomas, 2000). The second attends to theThomas, 2000). The second attends to the
concerns of service users, through user-ledconcerns of service users, through user-led
research.research.
THE ETHICS OF EBMTHE ETHICS OF EBM
Although there are ethical arguments forAlthough there are ethical arguments for
EBM, it also raises serious ethical problems.EBM, it also raises serious ethical problems.
First, it is a form of consequentialism: theFirst, it is a form of consequentialism: the
proposition that the worth of an action canproposition that the worth of an action can
be assessed by measuring its consequencesbe assessed by measuring its consequences
(Kerridge(Kerridge et alet al, 1998). Consequentialism, 1998). Consequentialism
may be acceptable if outcomes are easy tomay be acceptable if outcomes are easy to
define and measure, and if doctor anddefine and measure, and if doctor and
patient are in agreement about the naturepatient are in agreement about the nature
of the problem. But this is rarely so inof the problem. But this is rarely so in
psychiatry,psychiatry, where the internal experienceswhere the internal experiences
inherent ininherent in mental health problems, such asmental health problems, such as
voices or delusions, are not amenable tovoices or delusions, are not amenable to
objectificationobjectification and quantification. Diagnosesand quantification. Diagnoses
themselves are contentious and based solelythemselves are contentious and based solely
on personalon personal accounts and observation. Out-accounts and observation. Out-
comes such as quality of life may defy defini-comes such as quality of life may defy defini-
tion. Evidence-tion. Evidence-based medicine is ill-suitedbased medicine is ill-suited
to resolve the resultant conflict because itto resolve the resultant conflict because it
is unable to reconcile the values and beliefsis unable to reconcile the values and beliefs
of different stakeholders. Second, doctorsof different stakeholders. Second, doctors
define distress in terms of psychiatric dis-define distress in terms of psychiatric dis-
orders; they determine research objectives,orders; they determine research objectives,
carry out research, interpret research datacarry out research, interpret research data
and impleand implement research findings. Patientsment research findings. Patients
are expectedare expected to acquiesce in clinical deci-to acquiesce in clinical deci-
sions over which they have little control.sions over which they have little control.
Third, EBM may be at odds with commonThird, EBM may be at odds with common
morality, because it assesses interventionsmorality, because it assesses interventions
in terms only of efficacy. It does not resolvein terms only of efficacy. It does not resolve
how we shouldhow we should handle research evidencehandle research evidence
taken from unethitaken from unethical studies or unpublishedcal studies or unpublished
studies that have no ethical safeguards.studies that have no ethical safeguards.
There are also ethical concerns aboutThere are also ethical concerns about
modernism in psychiatry. Technologicalmodernism in psychiatry. Technological
accounts of madness and the coercive roleaccounts of madness and the coercive role
of psychiatry raise serious ethical issuesof psychiatry raise serious ethical issues
for the rights of people whose freedomfor the rights of people whose freedom
may be taken away and who may be forcedmay be taken away and who may be forced
to receive treatments they do not wantto receive treatments they do not want
(Bracken & Thomas, 2001). The potential(Bracken & Thomas, 2001). The potential
for coercion renders the failure to engagefor coercion renders the failure to engage
psychiatric patients in influencing researchpsychiatric patients in influencing research
agendas even more significant, and demon-agendas even more significant, and demon-
strates the importance of an ethical stancestrates the importance of an ethical stance
on EBM in psychiatry. We argue that theon EBM in psychiatry. We argue that the
best way of achieving this is by involvingbest way of achieving this is by involving
service users in research.service users in research.
THE CASE FORTHE CASE FOR
USER -LED RESEARCHUSER-LED RESEARCH
General medicine now recognises the import-General medicine now recognises the import-
ance of patient involvement in research. Inance of patient involvement in research. In
1999 the Chief Medical Officer established1999 the Chief Medical Officer established
an Expert Patients' Task Force to designan Expert Patients' Task Force to design
self-management programmes for peopleself-management programmes for people
suffering from chronic physical illness.suffering from chronic physical illness.
According to EntwistleAccording to Entwistle et alet al (1998), lay(1998), lay
involvement in research is politically man-involvement in research is politically man-
dated because prevailing notions of demo-dated because prevailing notions of demo-
cracy require that the general public, whocracy require that the general public, who
ultimately provide funds, should influenceultimately provide funds, should influence
research. Chalmers (1995) points out thatresearch. Chalmers (1995) points out that
basic research aimed at elucidating thebasic research aimed at elucidating the
causes of disease has attracted higher statuscauses of disease has attracted higher status
and funding than applied health researchand funding than applied health research
that helps people make informed decisionsthat helps people make informed decisions
about their treatment. He argues that theabout their treatment. He argues that the
involvement of patients is essential in devel-involvement of patients is essential in devel-
oping research that is relevant to patientsoping research that is relevant to patients
and carers. It also improves the quality ofand carers. It also improves the quality of
research, by encouraging a more open-research, by encouraging a more open-
minded approach as to which questionsminded approach as to which questions
are worth asking, which forms of healthare worth asking, which forms of health
care are worth investigating and whichcare are worth investigating and which
treatment outcomes matter.treatment outcomes matter.
WHY USER- LED RESEARCHWHY USER-LED RESEARCH
IS IMPORTANTIS IMPORTANT
In summary, there is political resistance toIn summary, there is political resistance to
seeing psychiatric patients as experts andseeing psychiatric patients as experts and
to their involvement as partners in helpingto their involvement as partners in helping
to set research agendas, coupled with ato set research agendas, coupled with a
dominance of clinical neuroscience in thedominance of clinical neuroscience in the
psychiatric and allied journals. User-ledpsychiatric and allied journals. User-led
research has developed out of frustrationresearch has developed out of frustration
11
BRITISH JOURNAL OF PSYCHIATRYBRITISH JOURNAL OF PSYCHIATRY (2002), 180, 1^3(2002), 180, 1^3 EDITORIALEDITORIAL
User-led research and evidence-based medicineUser-led research and evidence-based medicine
ALISON FAULKNER an d PHIL THOM ASALISON FAULKNER and PHIL THOMAS
FAULKNER & THOMASFAULKNER & THOMAS
with this situation. Research undertakenwith this situation. Research undertaken
by and with service users examines issuesby and with service users examines issues
and outcomes that are relevant and mean-and outcomes that are relevant and mean-
ingful to service users. To our knowledgeingful to service users. To our knowledge
there have been no papers published inthere have been no papers published in
psychiatric journals dealing with user-ledpsychiatric journals dealing with user-led
research, despite the recent growth of high-research, despite the recent growth of high-
quality research in this area. We argue thatquality research in this area. We argue that
there are several reasons why this mustthere are several reasons why this must
change.change.
Research methodologyResearch methodology
The gold standard of scientific respectabilityThe gold standard of scientific respectability
in health service research ± and the standardin health service research ± and the standard
upon which evidence is evaluated ± is theupon which evidence is evaluated ± is the
randomised controlled trial. This may berandomised controlled trial. This may be
the accepted way of answering the questionthe accepted way of answering the question
`which is the effective treatment for condi-`which is the effective treatment for condi-
tion X?', but people are complex subjectstion X?', but people are complex subjects
for investigative methods that befit thefor investigative methods that befit the
natural sciences. This raises questions aboutnatural sciences. This raises questions about
the interpretation and meaning of humanthe interpretation and meaning of human
behaviour, which is essential in understand-behaviour, which is essential in understand-
ing why the findings of quantitative studiesing why the findings of quantitative studies
may be less relevant in the real world. Why,may be less relevant in the real world. Why,
for example, do many people choose notfor example, do many people choose not
to take a drug whose efficacy may be well-to take a drug whose efficacy may be well-
established? Such questions can best beestablished? Such questions can best be
answered by qualitative research, whichanswered by qualitative research, which
is ideally suited to the elaboration andis ideally suited to the elaboration and
description of personal experience and todescription of personal experience and to
establishing the meaning behind people'sestablishing the meaning behind people's
views or actions.views or actions.
In pragmatic terms, the value of researchIn pragmatic terms, the value of research
evidence is only as good as the questionsevidence is only as good as the questions
we ask. Are we asking questions relevantwe ask. Are we asking questions relevant
to service users ± the people for whom theto service users ± the people for whom the
issue is most crucial? If the questions areissue is most crucial? If the questions are
inappropriate to start with, the resultsinappropriate to start with, the results
will be misleading. Clinical effectiveness,will be misleading. Clinical effectiveness,
if restricted to the narrow definition ofif restricted to the narrow definition of
`symptom relief', may fail to take into`symptom relief', may fail to take into
account relevant aspects of people's lives,account relevant aspects of people's lives,
aspects that may be crucial in determiningaspects that may be crucial in determining
an individual's decision to continue treat-an individual's decision to continue treat-
ment, remain in contact with services orment, remain in contact with services or
indeed survive.indeed survive.
User-led research challenges this byUser-led research challenges this by
asserting that research should be based inasserting that research should be based in
the subjective, lived experience of emotionalthe subjective, lived experience of emotional
distress. This raises the issue of ecologicaldistress. This raises the issue of ecological
validity, or the way in which research find-validity, or the way in which research find-
ings reflect, or fail to reflect, what happensings reflect, or fail to reflect, what happens
in the real world. Redefining outcomesin the real world. Redefining outcomes
according to users' priorities can help toaccording to users' priorities can help to
make greater sense of clinical research,make greater sense of clinical research,
improving its ecological validity. Forimproving its ecological validity. For
example, research on drug interventionsexample, research on drug interventions
rarely takes sufficient account of what it israrely takes sufficient account of what it is
actually like to take the drug. If clinical drugactually like to take the drug. If clinical drug
trials paid closer attention to the livedtrials paid closer attention to the lived
experience of those who take these drugs,experience of those who take these drugs,
we would have a better understanding ofwe would have a better understanding of
issues such as `non-compliance'.issues such as `non-compliance'.
Presenting alternativePresenting alternative
explanatory frameworksexplanatory frameworks
The dominant paradigm in psychiatry ren-The dominant paradigm in psychiatry ren-
ders the views of people with mental illnessders the views of people with mental illness
invalid and negates the person as an indivi-invalid and negates the person as an indivi-
dual. The medical model leaves little spacedual. The medical model leaves little space
for the individual's explanation of whyfor the individual's explanation of why
he or she experiences emotional distresshe or she experiences emotional distress
(Barrett, 1996). User-led research creates a(Barrett, 1996). User-led research creates a
space for users' understandings of theirspace for users' understandings of their
problems, laying the foundations for alter-problems, laying the foundations for alter-
native explanatory frameworks. When wenative explanatory frameworks. When we
consider how a diagnosis is made (self-consider how a diagnosis is made (self-
reporting, behaviour), then this approachreporting, behaviour), then this approach
has intrinsic validity. User-led researchhas intrinsic validity. User-led research
primarily attends to what people say aboutprimarily attends to what people say about
their experience and relies on their self-their experience and relies on their self-
defined frameworks for understanding thisdefined frameworks for understanding this
experience, not on professional concepts ofexperience, not on professional concepts of
illness. This approach has major implicationsillness. This approach has major implications
for services and treatment.for services and treatment.
Access to marginalised groupsAccess to marginalised groups
Modernist psychiatry regards itself asModernist psychiatry regards itself as
universal: applicable to all people at alluniversal: applicable to all people at all
times. Post-modern critiques challenge thistimes. Post-modern critiques challenge this
view and open up space for the views andview and open up space for the views and
beliefs of marginalised and excluded groups.beliefs of marginalised and excluded groups.
User-led research also endeavours to enableUser-led research also endeavours to enable
the views of marginalised communities tothe views of marginalised communities to
be heard alongside those of mainstreambe heard alongside those of mainstream
communities and to be given equal validity.communities and to be given equal validity.
POWER AND EMPOWERMENTPOWER AND EMPOWERMENT
A discussion of user-led research cannotA discussion of user-led research cannot
take place without a consideration of thetake place without a consideration of the
power differentials involved. Although thepower differentials involved. Although the
status of psychiatrists and patients differsstatus of psychiatrists and patients differs
vastly, so also does the status of differentvastly, so also does the status of different
research methodologies within the re-research methodologies within the re-
search community. Furthermore, conven-search community. Furthermore, conven-
tional academic and health servicestional academic and health services
research provides career opportunities forresearch provides career opportunities for
professional researchers, potentially atprofessional researchers, potentially at
the expense of their research subjects. Inthe expense of their research subjects. In
the meantime, service users and researchthe meantime, service users and research
participants are rarely paid for theirparticipants are rarely paid for their
`involvement'.`involvement'.
User-led research, on the other hand,User-led research, on the other hand,
aims to do something different. By focusingaims to do something different. By focusing
on theon the research processresearch process as much as on theas much as on the
outcomes, it aims to enable service usersoutcomes, it aims to enable service users
to take part in carrying out research whileto take part in carrying out research while
gaining skills and confidence in the process.gaining skills and confidence in the process.
It aims to be inclusive and informaIt aims to be inclusive and informative,tive,
ensuring that people who take part asensuring that people who take part as
research participants are kept fully informedresearch participants are kept fully informed
of the results and of any action subsequentlyof the results and of any action subsequently
taken. This is rarely the case with traditionaltaken. This is rarely the case with traditional
research.research.
EXAMPLES OFEXAMPLES OF
USER-LED RESEARCHUSER-LED RESEARCH
There are now many excellent examplesThere are now many excellent examples
of high-quality user-led research. We shallof high-quality user-led research. We shall
briefly consider two.briefly consider two. Strategies for LivingStrategies for Living
(Faulkner, 2000) was a qualitative study(Faulkner, 2000) was a qualitative study
involving interviewing of 71 mental healthinvolving interviewing of 71 mental health
service users. Designed and executed byservice users. Designed and executed by
service users, the research exploredservice users, the research explored
people's strategies for living and copingpeople's strategies for living and coping
with mental distress. The predominantwith mental distress. The predominant
theme to emerge concerned the import-theme to emerge concerned the import-
ance of relationships with others,ance of relationships with others,
especially family and friends,especially family and friends, and peopleand people
encountered at day centres andencountered at day centres and self-helpself-help
groups. Peer support, the support of othersgroups. Peer support, the support of others
in similar circumstances and the value ofin similar circumstances and the value of
self-help received warm and grateful praise.self-help received warm and grateful praise.
The first experience of meetingThe first experience of meeting others withothers with
similar problems, in a group or day centre,similar problems, in a group or day centre,
was often a significant turningwas often a significant turning point inpoint in
people's lives, emphasising the value ofpeople's lives, emphasising the value of
acceptance and belonging against a back-acceptance and belonging against a back-
ground of stigma and discrimination. Thisground of stigma and discrimination. This
suggests that practitioners should pay moresuggests that practitioners should pay more
attention to the role of self-help and peerattention to the role of self-help and peer
support in overcoming stigma and discrimi-support in overcoming stigma and discrimi-
nation. Mental health professionals shouldnation. Mental health professionals should
facilitate self-management, rather thanfacilitate self-management, rather than
prioritising interventions aimed at symp-prioritising interventions aimed at symp-
tom eradication.tom eradication.
Rose (2001) has demonstrated the valueRose (2001) has demonstrated the value
of user-led research in defining standardsof user-led research in defining standards
of good practice in mental health care. Inof good practice in mental health care. In
her study, user satisfaction was positivelyher study, user satisfaction was positively
correlated with the amount of informationcorrelated with the amount of information
provided, especially information about side-provided, especially information about side-
effects of medication. User satisfaction waseffects of medication. User satisfaction was
negatively correlated with the subjectivenegatively correlated with the subjective
experience of being overmedicated. Theexperience of being overmedicated. The
message is clear as far as psychiatricmessage is clear as far as psychiatric
practice is concerned: good practice doespractice is concerned: good practice does
notnot necessarily depend on rocket science.necessarily depend on rocket science.
SimpleSimple things, such as ensuring accessthings, such as ensuring access
to high-quality information and takingto high-quality information and taking
steps to prevent overmedication, are verysteps to prevent overmedication, are very
significant to service users.significant to service users.
22
USER-LED RES EARCH AND EVIDENCE - BAS ED MEDICINEUSER-LEDRESEARCHANDEVIDENCE-BASEDMEDICINE
CONCLUSIONSCONCLUSIONS
No matter how `scientific' we aspire to be,No matter how `scientific' we aspire to be,
clinical decisions always will involve valueclinical decisions always will involve value
judgements and it is a serious mistake tojudgements and it is a serious mistake to
pretend otherwise. This makes it essentialpretend otherwise. This makes it essential
that psychiatrists reflect critically on thethat psychiatrists reflect critically on the
values that underlie the advice they offervalues that underlie the advice they offer
and the decisions they make, and that theyand the decisions they make, and that they
understand how these values relate to thoseunderstand how these values relate to those
of patients. Placing user-led research onof patients. Placing user-led research on
an equal footing with professional researchan equal footing with professional research
enables professionals to think more carefullyenables professionals to think more carefully
about the values behind scientific evidence.about the values behind scientific evidence.
A marriage of two types of expertise is theA marriage of two types of expertise is the
essential ingredient of the best mentalessential ingredient of the best mental
health care: expertise by experience and ex-health care: expertise by experience and ex-
pertise by profession. Psychiatrists mustpertise by profession. Psychiatrists must
work in alliance with service users to findwork in alliance with service users to find
ways of integrating user-led research withways of integrating user-led research with
EBM. For this to happen, concepts of clin-EBM. For this to happen, concepts of clin-
ical governance must change. Psychiatristsical governance must change. Psychiatrists
should attach as much importance to user-should attach as much importance to user-
led research in the processes of clinicalled research in the processes of clinical
decision-making as they do to randomiseddecision-making as they do to randomised
controlled trials. This has implications forcontrolled trials. This has implications for
continuing professional development andcontinuing professional development and
the training of psychiatrists. It is time forthe training of psychiatrists. It is time for
greater openness between the professiongreater openness between the profession
and service users, in our academic depart-and service users, in our academic depart-
ments, journals and scientific meetings.ments, journals and scientific meetings.
The Department of Health in settingThe Department of Health in setting
national research and development policiesnational research and development policies
in mental health must attach as muchin mental health must attach as much
weight to `partnership' research as it doesweight to `partnership' research as it does
to other health areas. To do otherwise is toto other health areas. To do otherwise is to
discriminate against psychiatric patients.discriminate against psychiatric patients.
DECLARATIONOF INTERESTDECLARATIONOF INTEREST
None.None.
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33
ALISON FAULKNER, MSc, Mental Health Foundation, London; PHILTHOMAS, FRCPsych, Bradford CommunityALISON FAULKNER, MSc, Mental Health Foundation,London; PHILTHOMAS, FRCPsych, Bradford Community
HealthTrust and University of Bradford, BradfordHealthTrust and University of Bradford, Bradford
Correspondence: Phil Thomas,Level 3,Horton Park Centre,99 Horton Avenue,Bradford BD7 3EG,UK.Correspondence: Phil Thomas,Level 3,Horton Park Centre,99 Horton Avenue,Bradford BD7 3EG,UK.
E-mail: p.thomasE-mail: p.thomas @@bradford.ac.ukbradford.ac.uk
(First received 18 January 2001, final revision 25 June 2001, accepted 6 July 2001)(First received 18 January 20 01, final revision 2 5 June 20 01, accepted 6 July 20 01)
... To be a patient or even an ex-client is to be discounted'; we have come a long way. While a variety of expertise is relevant to a grounded peer support discipline and mental health practice per se (Faulkner & Thomas, 2002), lived experience as the core experiential knowledge to inform peer support appears to be uncontested. There have been, of course, critics of this 'lay expertise' in healthcare, particularly from reductionist perspectives. ...
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Background The involvement of people with lived experience (LEX) workers in the development, design, and delivery of integrated health services seeks to improve service user engagement and health outcomes and reduce healthcare gaps. Yet, LEX workers report feeling undervalued and having limited influence on service delivery. There is a need for systematic improvements in how LEX workforces are engaged and supported to ensure the LEX workforce can fully contribute to integrated systems of care. Objective This study aimed to operationalize the Consolidated Framework for Implementation Research (CFIR) using a rigorous scoping review methodology and co‐creation process, so it could be used by health services seeking to build and strengthen their LEX workforce. Search Strategy A systematic literature search of four databases was undertaken to identify peer‐reviewed studies published between 2016 and 2022 providing evidence of the inclusion of LEX workers in direct health service provision. Data Extraction and Synthesis A descriptive‐analytical method was used to map current evidence of LEX workers onto the CFIR. Then, co‐creation sessions with LEX workers (n = 4) and their counterparts—nonpeer workers (n = 2)—further clarified the structural policies and strategies that allow people with LEX to actively participate in the provision and enhancement of integrated health service delivery. Main Results Essential components underpinning the successful integration of LEX roles included: the capacity to engage in a co‐creation process with individuals with LEX before the implementation of the role or intervention; and enhanced representation of LEX across organizational structures. Discussion and Conclusion The adapted CFIR for LEX workers (CFIR‐LEX) that was developed as a result of this work clarifies contextual components that support the successful integration of LEX roles into the development, design, and delivery of integrated health services. Further work must be done to operationalize the framework in a local context and to better understand the ongoing application of the framework in a health setting. Patient or Public Contribution People with LEX were involved in the operationalization of the CFIR, including contributing their expertise to the domain adaptations that were relevant to the LEX workforce.
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... As the first author was herself a survivor of IPSV, the analysis was survivor-led and conducted from a perspective borne of lived experience. Conducting research from an explicit survivor standpoint may increase the likelihood that findings will resonate with survivors [30], a goal which lies at the heart of trauma-informed approaches [31]. A related strength was that trauma-informed research design principles were incorporated into the survey design [20]. ...
“Counteract the gaslighting” – a thematic analysis of open-ended responses about what women survivors of intimate partner sexual violence need from service providers
Article
Full-text available
  • Feb 2024
  • BMC Wom Health
Background Intimate partner sexual violence (IPSV) is a prevalent but misunderstood form of gender-based violence with significant impacts women’s health and well-being. Research suggests that IPSV has a specific context and unique impacts, but little is known about how to tailor service responses. To address this gap, we explored help-seeking experiences and needs among IPSV survivors after disclosure. Methods This study draws on qualitative data from a subsample of women who participated in a cross-sectional survey about the service needs of intimate partner violence survivors. Women who reported IPSV and provided information about IPSV-specific help-seeking needs after disclosure were included in the analysis. Open-ended text responses of 37 IPSV survivors were analysed using thematic analysis. Results IPSV was invisible and silenced in service responses. Three themes suggest potential ways forward. In the first theme, ‘Don’t dismiss it’, women needed providers to take their disclosures seriously and listen to the significant impacts of IPSV on their well-being and safety. In the second theme, ’See the bigger picture’, women needed service providers to understand that IPSV fits into broader patterns of abuse, and that psychological abuse and coercive control impacts women’s ability to consent. In the third theme, ‘counteract the gaslighting’, women needed providers to educate them about the continuum of IPSV and help them label IPSV as a form of violence. Conclusions Our exploratory findings extend the limited evidence base on IPSV and highlight a need for further in-depth research to explore a tailored approach to supporting IPSV survivors. To avoid contributing to the silencing of IPSV survivors, service responses should recognise the harmful and sexualised nature of IPSV, challenge cultural stereotypes that minimise IPSV, and understand that co-occurring psychological abuse may exacerbate shame and prevent women from articulating the source of their distress.
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... It has a strong effect on funding so proposals using RCTs and cohort studies have a much stronger chance of being successful financially. It clashes with the kind of work done by survivors [38] The literature discussed earlier was all to some degree 'participatory' . Invisible in the Cochrane hierarchy, less likely to be funded. ...
PPI in psychiatry and the problem of knowledge
Article
Full-text available
  • Jan 2024
  • BMC PSYCHIATRY
This article begins by locating Patient and Public involvement ((PPI) historically and argues that ‘mental health’ was a special case. This movement held promise for service users in repositioning them as researchers as opposed to ‘subjects’. We argue, however, that ultimately it failed and was reduced to involved publics ‘tinkering at the edges’. In respect to this we reference institutions, hierarchies, organisations and the overall political climate. Ultimately, however, it failed at the level of knowledge itself in that t he underlying assumptions of conventional researchers, their aims and goals, clashed with those of the assumptions and aims of survivors. However, we argue that all is not lost, the mainstream itself is imploding and beneath the surface forms of distinctly survivor-led knowledge are emerging.
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... To be a patient or even an ex-client is to be discounted'; we have come a long way. While a variety of expertise is relevant to a grounded peer support discipline and mental health practice per se (Faulkner & Thomas, 2002), lived experience as the core experiential knowledge to inform peer support appears to be uncontested. There have been, of course, critics of this 'lay expertise' in healthcare, particularly from reductionist perspectives. ...
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... The widely held consensus, reiterated by Crawford and Kessel (1999) and Faulkner and Thomas (2002) is that as a means of understanding human behaviour qualitative approaches provide interesting insights. This observation is not unique to the study of IPE and collaborative experiences but focussing on describing the experiences of participants who utilised the RPMs space by interacting and engaging in dialogue with each other, qualitative research methods are useful. ...
A case study on reflective practice meetings as an example of interprofessional education (IPE) within a specialist secure forensic adolescent mental health setting in the UK
Thesis
  • Jan 2022
Learning with, from and about each other within a multidisciplinary forum of Reflective Practice Meetings (RPMs) encourages individuals to gain a shared understanding of the nature of the caring task, offers an insight into differing (inter)disciplinary perspectives and builds a collaborative ethos in the team’s approach to care. Despite such noticeable benefits of working collaboratively, there are challenges that often hinder this within the clinical practice environment. RPMs can be identified as an example of interprofessional education (IPE) within a clinical setting. There is a plethora of drivers calling for the relationship between interprofessional education, collaboration and interprofessional working practice (IPW) to be fully realised in order for benefits to be embedded within the fabric of the health, education and social care systems. Therefore, one of the ways of encouraging a shared understanding that fosters collaborative approaches amongst professionals is to provide opportunities that encourage an open dialogue such as an RPM. Engaging with each other enables individuals to realise the ‘collaborative advantage vision’, leading to the social construction of knowledge and co-creation of a shared understanding of the nature of the caring task. Despite the divergence of opinion within the literature, there is a general acknowledgement and consensus about the immense benefits of embedding IPE and collaborative approaches within the health, education and social care systems. This thesis argues that RPMs are an example of IPE. As a result, a study was conducted within a specialist Secure Forensic Mental Health Service for Young People (SFMHSfYP (The Unit). The study is underpinned by IPE informing theory couched within a framework. The framework provides a lens to explore the research questions that were derived from the literature review. Methodologically, a case study approach (single site) is operationalized. The data collection methods included conducting Participant Observations, audio recording of RPMs, completion of Reflective logs (by participants), and audio recordings of One-to-One semi-structured interview. The data analysis process entailed transcribing of audio recorded material verbatim and this was followed by employing a thematic analysis of content. Three themes emerged namely; Nature of the Caring task, “Keeping the show on the Road”, and Use of Space. A critical descriptive analysis of the themes is presented within the findings chapter. This is followed by a critical analysis of the super-ordinate themes, thus providing refined research study outputs of the processes that occurred within the RPMs namely; Communication and sharing information, Negotiation of different value systems, Power relations and reflections on power, Emotional offloading, and Personal and group reflection. The study recommends that further research is required in order to extend the field of IPE in particular understanding the role of the unconscious processes within a reflective practice context
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... Indeed, the unidirectional application of expert knowledge from academics and service providers toward "non-expert citizens" has been shown to be problematic, as the benefits of such knowledge may not be as helpful for their wellbeing as it is for the purveyors of that knowledge (Prior, 1991;Faulkner and Thomas, 2002). For instance, Torfing et al. (2019) have identified that the two predominant paradigms of public service organizational culture and provision (as a legal authority or as a service provider) perpetuate disempowerment and passivity among citizens rather than facilitate citizens to define and solve the shared problems and common tasks in society. ...
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... Engaging in PPI activities within research is now considered best practice (85), with the combination of expertise through experience of a mental health disorder and expertise through clinical experience suggested to facilitate the best design and provision of mental healthcare services (86). As an example, a co-design of mental healthcare services between staff, patients and carers has been demonstrated to improve the quality of acute care services (87). ...
Learnings from user feedback of a novel digital mental health assessment
Article
Full-text available
  • Oct 2022
Digital mental health interventions (DMHI) have the potential to address barriers to face-to-face mental healthcare. In particular, digital mental health assessments offer the opportunity to increase access, reduce strain on services, and improve identification. Despite the potential of DMHIs there remains a high drop-out rate. Therefore, investigating user feedback may elucidate how to best design and deliver an engaging digital mental health assessment. The current study aimed to understand 1304 user perspectives of (1) a newly developed digital mental health assessment to determine which features users consider to be positive or negative and (2) the Composite International Diagnostic Interview (CIDI) employed in a previous large-scale pilot study. A thematic analysis method was employed to identify themes in feedback to three question prompts related to: (1) the questions included in the digital assessment, (2) the homepage design and reminders, and (3) the assessment results report. The largest proportion of the positive and negative feedback received regarding the questions included in the assessment (n = 706), focused on the quality of the assessment (n = 183, 25.92% and n = 284, 40.23%, respectively). Feedback for the homepage and reminders (n = 671) was overwhelmingly positive, with the largest two themes identified being positive usability (i.e., ease of use; n = 500, 74.52%) and functionality (i.e., reminders; n = 278, 41.43%). The most frequently identified negative theme in results report feedback (n = 794) was related to the report content (n = 309, 38.92%), with users stating it was lacking in-depth information. Nevertheless, the most frequent positive theme regarding the results report feedback was related to wellbeing outcomes (n = 145, 18.26%), with users stating the results report, albeit brief, encouraged them to seek professional support. Interestingly, despite some negative feedback, most users reported that completing the digital mental health assessment has been worthwhile (n = 1,017, 77.99%). Based on these findings, we offer recommendations to address potential barriers to user engagement with a digital mental health assessment. In summary, we recommend undertaking extensive co-design activities during the development of digital assessment tools, flexibility in answering modalities within digital assessment, customizable additional features such as reminders, transparency of diagnostic decision making, and an actionable results report with personalized mental health resources.
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“It has to be better, otherwise we will get stuck.” A Review of Novel Directions for Mental Health Reform and Introducing Pilot Work in the Netherlands
Article
Full-text available
  • Nov 2023
  • Clin Pract Epidemiol Ment Health
Background The current state of mental health care in the Netherlands faces challenges such as fragmentation, inequality, inaccessibility, and a narrow specialist focus on individual diagnosis and symptom reduction. Methods A review suggests that in order to address these challenges, an integrated public health approach to mental health care that encompasses the broader social, cultural, and existential context of mental distress is required. Results A Mental Health Ecosystem social trial seeks to pilot such an approach in the Netherlands, focusing on empowering patients and promoting collaboration among various healthcare providers, social care organizations, and peer-support community organizations, working together in a regional ecosystem of care and committed to a set of shared values. In the ecosystem, mental health problems are examined through the prism of mental variation in context whilst scaling up the capacity of group-based treatment and introducing a flexible and modular approach of (2 nd order) treatment by specialists across the ecosystem. The approach is to empower naturally available resources in the community beyond professionally run care facilities. Digital platforms such as psychosenet.nl and proud2bme.nl, which complement traditional mental health care services and enhance public mental health, will be expanded. The capacity of recovery colleges will be increased, forming a national network covering the entire country. GEM will be evaluated using a population-based approach, encompassing a broad range of small-area indicators related to mental health care consumption, social predictors, and clinical outcomes. The success of GEM relies heavily on bottom-up development backed by stakeholder involvement, including insurers and policy-making institutions, and cocreation. Conclusion By embracing a social trial and leveraging digital platforms, the Dutch mental health care system can overcome challenges and provide more equitable, accessible, and high-quality care to individuals.
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Specific Projects Led by Service Users
Chapter
  • Sep 2022
This chapter focuses in detail on two sets of projects that are user-led, that is the lead researcher was a survivor and most of the others involved were likewise survivors. Starting with an analysis of what makes a ‘user researcher’, which is not static, I go on to look at two conventional ‘methods’ that we radically altered to produce different knowledge. The ‘we’ is unambiguous here, I led both these pieces of work and worked with survivor colleagues. The examples are user-defined systematic reviews, taking the example of survivor perspectives on Electroconvulsive Therapy (ECT) and Patient-Generated Patient-Reported Outcome Measures (PG-PROMs), using the example of inpatient care. These ‘methodological innovations’ were of course conceptual too but there was a journey involved for the researchers to shift the lens away from methods, because our context—an academic one—was heavily geared towards the methodological. The changes were made so that survivors could speak freely, meaning that the elements of a story were collectively formed. I look at both projects critically and in relation to the ‘mainstream’ as well as in light of the arguments about ‘experience’ in the last chapter.
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Evidence-based medicine, user involvement and the post-modern paradigm
Article
Full-text available
  • Nov 1999
Working in general psychiatry requires us to live with tensions. We have to live with the tension between the paternalism of compulsory admissions and advocating the autonomy and rights of people with a mental illness. A further tension is exacerbated by two movements of recent years, evidence-based medicine and user involvement. These are broadly to be welcomed, but will ultimately bring psychiatry further into the conflict between the ‘modern’ and ‘post-modern’ views of the world.
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Personal paper: Ethics and evidence based medicine
Article
Full-text available
  • Apr 1998
Evidence based medicine is founded upon an ideal—that decisions about the care of individual patients should involve the “conscientious, explicit and judicious use of current best evidence.”1 Several publications are dedicated to evidence based medicine, and, at an international level, the Cochrane Collaboration has been formed to gather, analyse, and disseminate evidence derived from published research.2 Several practical approaches to evidence based medicine in clinical decision making have also been described. 3 4Evidence based medicine, it is claimed, leads to improvements in clinicians' knowledge, reading habits, and computer literacy; provides a framework for teaching; enables junior team members to contribute to decisions; and allows better communication with patients and more effective use of resources.5 From an ethical perspective, the strongest arguments in support of evidence based medicine are that it allows the best evaluated methods of health care (and useless or harmful methods) to be identified and enables patients and doctors to make better informed decisions. 5 6However, the presence of reliable evidence does not ensure that better decisions will be made. Claims that evidence based medicine offers an improved method of decision making are difficult to evaluate because current practice is so poorly defined. Medical decision making draws upon a broad spectrum of knowledge—including scientific evidence, personal experience, personal biases and values, economic and political considerations, and philosophical principles (such as concern for justice). It is not always clear how practitioners integrate these factors into a final decision, but it seems unlikely that medicine can ever be entirely free of value judgments. Summary points Evidence based medicine is based on a strong ethical and clinical ideal—that it allows the best evaluated methods of health care to be identified and enables patients and doctors to make better informed decisions Evidence based medicine is unable to resolve competing claims of different interest groups Collecting sufficient satisfactory evidence raises problems—randomised controlled trials are only possible where there is genuine “therapeutic equipoise” Crude application of results of clinical trials to individual care may disadvantage some patients Allocating resources on the basis of evidence involves implicit value judgments and could imply that lack of evidence means lack of value We review ethical concerns associated with evidence based medicine—in particular that it invites a simplistic approach to the role of evidence in medicine, which can be misinterpreted and may not allow for the complexity of clinical decision making. The philosophical basis Evidence based medicine represents a practical example of consequentialism—the proposition that the worth of an action can be assessed by the measurement of its consequences. Criticisms of consequentialist philosophies may be considered under three main headings. Firstly, many important outcomes cannot be adequately measured or defined. Secondly, it is often unclear whose interests should be considered in determining outcomes. Thirdly, consequentialism may lead to conclusions that are thought to be unethical from other points of view. These criticisms may equally apply to evidence based medicine. Immeasurable outcomes The first philosophical criticism of evidence based medicine is that many important outcomes of treatment cannot be measured. This arises from the fact that evidence based medicine claims to provide a simple, logical process for reasoning and decision making—look at the evidence and decide accordingly. But to make balanced decisions, all the relevant consequences of an action must be considered. Unfortunately, current measures of some outcomes of medical treatment (such as pain) are inadequate; some (such as justice) may not be measurable; and other complex outcomes (such as quality of life) may not even be adequately definable. 7 8 View larger version:In a new windowDownload as PowerPoint Slide The philosopher Bernard Williams notes that values which may be easily quantified in economic terms often require comparison with values which are not quantifiable. “Again and again defenders of such values are faced with the dilemma of either refusing to quantify the value in question, in which case it disappears from the sum altogether, or else of trying to attach some quantity to it, in which case they misrepresent what they are about and also usually lose the argument, since the quantified value is not enough to tip the scale.”9 This is particularly the case in medicine, where intangible values such as justice or quality of life are frequently balanced against easily quantified values such as cost or mortality. Deciding between competing claims The second philosophical criticism, that it may be impossible to decide between competing claims of different stakeholders, is emphasised by the manner in which patients continue to have little influence over the priorities of research. Evidence based medicine claims to reject the power of expert opinion but it is still mostly doctors who determine research objectives, who interpret research data, and who implement research findings. A number of commentators have called for greater involvement by consumer groups in setting research agendas, but how conflicts between the agendas of the different stakeholders are to be resolved remains unclear. 10 11 Evidence based medicine is unable to address political concerns because the values of different stakeholders, and hence the way in which they interpret evidence, cannot always be made congruent with each other. At odds with common morality The third philosophical criticism, that evidence based medicine may lead to activities that seem at odds with common morality, arises from the fact that evidence based medicine assesses interventions solely in terms of evidence of efficacy. An example of the difficulties that may arise from this approach occurs in the field of meta-analysis. Researchers performing meta-analyses are generally urged to search as widely as possible for data and to use unpublished studies if they are methodologically sound. However, valuable research findings may arise from unethically conducted research and data from unpublished studies may not meet the ethical safeguards that are demanded by publishers. In such cases it may be unclear whether results should be used or discarded. Most of the discussion of this topic has focused on Nazi experimentation,12 but there are many more recent examples of unethical research.13 The New England Journal of Medicine has stated that it will not publish results of unethical research, regardless of scientific merit; but what these standards mean in practice is not entirely clear.13-15 For example, the Gruppo Italianao per lo Studio della Sopravivenza nell Infarto Micardio (GISSI-2) trial, published in the Lancet in 1990, did not require the informed consent of trial subjects.16 Although few present day ethics committees would accept this standard, this study has been widely quoted and included in many meta-analyses. Ethically it seems clear that both researchers and publishers should consider the ethical basis of studies that are included in meta-analysis, but the extent of this obligation remains uncertain. Collecting evidence Randomised controlled trials Proponents of evidence based medicine emphasise the value of some forms of evidence over others, placing particular emphasis upon the results of randomised controlled trials.17 For example, the United States Preventive Services Taskforce rates the value of evidence from randomised controlled trials as “grade I,” evidence from non-randomised trials as “grade II,” and evidence from the opinions of respected authorities as “grade III.”18 Ethical concerns Randomised controlled trials have the potential to prevent the propagation of worthless treatments and confirm the value of effective treatments. They raise a number of issues that cause ethical concern, including: the selection of subjects, consent, randomisation, the manner in which trials are stopped, and the continuing care of subjects once the trials are complete. “Therapeutic equipoise” The administration of randomised controlled trials requires doctors and patients to balance the requirements of several distinct roles—doctors may act simultaneously as physicians and research scientists, and patients as invalids and research subjects. It has been suggested that physicians' moral responsibilities towards their patients are inconsistent with any recommendation that the patients should participate in randomised controlled trials because of this conflict of interest. 19 20 However, it is held that doctors may recommend that their patients participate if they are in a state of “therapeutic equipoise”—that is, there is genuine doubt about the value of different interventions.21 Equipoise is not generally a problem in large clinical trials designed to investigate treatments with only moderate effect sizes. Indeed, a major value of randomised controlled trials is that they allow identification of moderate benefits that would otherwise be obscured by bias and random effects.22 However, equipoise may not be achievable when interventions have very great benefits, or major risks. These interventions need to be investigated in other ways, such as by reporting clinical observations or through the use of historical controls. Researcher's choice of experimental protocols may therefore be limited by ethical concerns and the gathering of “grade I” or “grade II” evidence may be prohibited by ethical requirements. Using evidence Individual care and resource allocation Clinical trials seem the best basis for clinical decision making. However, compared with other topics in evidence based medicine, the techniques for accurate application of trial results have received scant attention. There is a widely held view that the correct approach is through a comparison of the trial subjects and the population to which the results are to be applied.23 This is not necessarily so, as the overall results of a trial represent an average effect, and even within the trial population some will experience a greater than average improvement in outcomes, while others may suffer harm. 24 25 Consequently, although crude applications of trial results may on average do more good than harm, they may none the less disadvantage some patients. Systematic bias Governments and health funds find the notion of allocating health resources on the basis of evidence attractive.26 Eddy has suggested that healthcare funds should be required to cover interventions only if there is sufficient evidence that they can be expected to produce their intended effects.27 The Australian health minister, Dr Michael Wooldridge, who is a strong supporter of evidence based medicine, has adopted a similar position, stating “[we will] pay only for those operations, drugs and treatments that according to available evidence are proved to work.”26 Given the complexities of the issues surrounding resource allocation, the drive to seek certainty and simplicity at the policy level is understandable. However, the large quantities of trial data required to meet the standards of evidence based medicine are available for relatively few interventions. Evidence based medicine may therefore introduce a systematic bias, resulting in allocation of resources to those treatments for which there is rigorous evidence of effectiveness, or towards those for which there are funds available to show effectiveness (such as new pharmaceutical agents). This may be at the expense of other areas where rigorous evidence does not currently exist or is not attainable (such as palliative care services). Allocating resources on the basis of evidence may therefore involve implicit value judgments, and it may only be a short step from the notion that a therapy is “without substantial evidence” to it being thought to be “without substantial value.”8 Individual versus population health Evidence based medicine, as described above, concentrates upon the efficacy of individual treatments. Physicians must not only address the needs of individual patients, but should also be concerned with issues of efficiency and population health.28 Proponents of evidence based medicine argue that these issues can be resolved by the use of “evidence based purchasing.” However, decisions reached rationally at the population level will at times conflict with those made in the interests of the individual. Evidence based medicine does not provide a means to settle such conflicts. Even attempts to replace evidence based medicine with other quantitative methods such as “decision-analysis based medical decision-making” seem unlikely to remove from medicine the need for reasoning that is based on value.29 Simplistic solutions According to Williams, “there is great pressure for research into techniques to make larger ranges of social value commensurable. Some of the effort should rather be devoted to learning—or learning again—how to think intelligently about conflicts of values which are incommensurable.”9 This is particularly the case where it comes to making decisions about allocation of health resources. Those charged with making these decisions are seeking simplistic solutions to inherently complex problems—the danger is that through evidence based medicine we will supply them. Acknowledgments Funding: No additional funding. Conflict of interest: None. References1.↵Sackett DL, Rosenberg WMC, Gray JAM, Harnes RB, Richardson WS. Evidence based medicine: what it is and what it isn't. BMJ 1996;312:71-72.OpenUrlFREE Full Text2.↵Chalmers I, Dickersin K, Chalmers TC. Getting to grips with Archie Cochrane's agenda. BMJ 1992;305:786-788.3.↵Rosenberg W, Donald A. Evidence based medicine: an approach to clinical problem-solving. BMJ 1995;312:1122-1126.OpenUrl4.↵Henry D. Economic analysis as an aid to subsidisation decisions. The development of Australian guidelines for pharmaceuticals. PharmacoEconomics 1992;1:54-67.OpenUrlMedline5.↵Bastian H. The power of sharing knowledge. Consumer participation in the Cochrane Collaboration. Oxford: UK Cochrane Centre, 1994.6.↵Hope T. Evidence-based medicine and ethics. J Med Ethics 1995;21:259-260.OpenUrlFREE Full Text7.↵Guyatt GH, Sackett DL, Cook DJ for the Evidence-Based Medicine Working Group. Users' guides to the medical literatures. JAMA 1994;271:59-63.OpenUrlFREE Full Text8.↵Evidence-Based Care Resource Group. Evidence-based care. 1. Setting priorities: how important is this problem? Can Med Assoc J 1994;150:1249-1254.OpenUrlFREE Full Text9.↵Williams B. Morality. Cambridge: Cambridge University Press, 1972.10.↵Chalmers I. What do I want from health researchers when I am a patient? BMJ 1995;310:1315-1318.OpenUrlFREE Full Text11.↵Oliver SR. How can health service users contribute to the NHS R and D program? BMJ 1995;310:1318-1320.OpenUrlFREE Full Text12.↵Berger RL. Nazi science—the Dachau hypothermia experiments. N Engl J Med 1990;322:1435-1440.OpenUrlMedlineWeb of Science13.↵Samei E, Kearfott KJ. A limited bibliography of the federal government-funded human radiation experiments. Health Physics 1995;69:885-891.OpenUrlMedlineWeb of Science14.Angel M. The Nazi hypothermia experiments and unethical research today. N Engl J Med 1990;322:1462-1464.OpenUrlMedlineWeb of Science15.Smith R. Informed consent: the intricacies. BMJ 1997;314:1059-1060.OpenUrlFREE Full Text16.↵Gruppo Ialiano per lo Studio della Sopravvivenza nell Infarto Miocardio. GISSI-2: a factorial randomised trial of alteplase versus streptokinase and heparin versus no heparin among 12,490 patients with acute myocardial infarction. Lancet 1990;336:65-71.OpenUrlMedlineWeb of Science17.↵Mulrow CD. Rationale for systematic reviews. BMJ 1994;309:597-599.OpenUrlFREE Full Text18.↵US Preventive Services Taskforce. Guide to clinical preventive services., 2nd ed., Baltimore: Williams and Wilkins, 1995:862.19.↵Hellman S, Hellman DS. Of mice but not men. Problems of the randomised clinical trial. N Engl J Med 1991;324:1585-1589.OpenUrlMedlineWeb of Science20.↵Howson C, Urbach P. Scientific reasoning—a Bayesian approach., 2nd ed. Chicago: Open Court, 1993.21.↵Shimm DS, Spece RG. Ethical issues and clinical trials. Drugs 1993;46:579-584.OpenUrlMedlineWeb of Science22.↵Yusof S, Collins R, Peto R. Why do we need some large, simple randomised trials? Stat Med 1984;3:409-420.OpenUrlMedlineWeb of Science23.↵Walsh JT, Gray D, Keating NA, Cowley AJ, Hampton JR. ACE for whom? Implications for clinical practice of post-infarct trials. Br Heart J 1995;73:470-474.OpenUrlFREE Full Text24.↵Hlakty MA, Califf RM, Harrell FE Jr, Lee KL, Mark DB, Muhlbaier LH, et al. Clinical judgement and therapeutic decision making. J Am Coll Cardiol 1990;15:1-14.OpenUrlFREE Full Text25.↵Glasziou PP, Irwig LM. An evidence based approach to individualising treatment. BMJ 1995;311:1356-1359.OpenUrlFREE Full Text26.↵Downey M. Trust me I'm a doctor. Sydney Morning Herald. 10 May 1997:1.27.↵Eddy DK. Benefit language; criteria that will improve quality while reducing costs. JAMA 1996;275:650-657.OpenUrlFREE Full Text28.↵Maynard A. Evidence-based medicine: an incomplete method for informing treatment choices. Lancet 1997;349:126-128.OpenUrlCrossRefMedlineWeb of Science29.↵Dowie J. “Evidence-based”, “cost-effective”, and “preference-driven” medicine: decision analysis based medical decision making is the pre-requisite. J Health Serv Res Policy 1996;1:104-113.OpenUrlMedline
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Lay perspectives: Advantages for health research
Article
Full-text available
  • Mar 1998
Although involvement of the consumer is increasingly being advocated in health related research, it is not welcome universally. Furthermore, the underlying rationale is rarely made explicit. Policy makers, health care professionals, and researchers need to be clear about the benefits and ways of including lay perspectives and the criteria for evaluating these. Examples of lay involvement in setting research agendas,1 2 3 4 methodological debate,5 and specific projects4 6 4 are accumulating, but little clear evidence about the benefits and costs of different ways of incorporating lay input into health services research is available. We outline two basic reasons for incorporating lay perspectives into research and discuss some common objections. A framework is offered to help clarify the dimensions of lay involvement in health research. We use the term “lay” to mean people who are neither health care professionals nor health services researchers, but who may have specialised knowledge related to health. This includes patients, the general public, and consumer advocates. The current interest in incorporating lay perspectives into health services research reflects broad social and political trends and developments in health care that have involved some breaching of the boundaries between medical professionals and others. The assumptions that the “experts”–doctors and biomedical researchers—are the best judges of what research is needed and should be exempt from democratic accountability are questioned. In addition, theoretical and empirical work on the philosophy and sociology of science has shown that the culture and values of those involved can influence research and the knowledge derived from it.8 The relevance of much research that has been driven by narrow professional and academic interests is increasingly being questioned.9 10 ![][1] #### Summary points Including lay people in health services research has been mandated politically and could improve the quality and impact of research Patients and … [1]: /embed/graphic-1.gif
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Postpsychiatry: A new direction for mental health
Article
Full-text available
  • Apr 2001
Government policies are beginning to change the ethos of mental health care in Britain. The new commitment to tackling the links between poverty, unemployment, and mental illness has led to policies that focus on disadvantage and social exclusion.1 These emphasise the importance of contexts, values, and partnerships and are made explicit in the national service framework for mental health.2 The service framework raises an agenda that is potentially in conflict with biomedical psychiatry. In a nutshell, this government (and the society it represents) is asking for a very different kind of psychiatry and a new deal between health professionals and service users. These demands, as Muir Gray has recently observed, apply not only to psychiatry but also to medicine as a whole, as society's faith in science and technology, an important feature of the 20th century, has diminished.3 According to Muir Gray, “Postmodern health will not only have to retain, and improve, the achievements of the modern era, but also respond to the priorities of postmodern society, namely: concern about values as well as evidence; preoccupation with risk rather than benefits; the rise of the well informed patient.”3 Medicine is being cajoled into accepting this reality, but psychiatry faces the additional problem that its own modernist achievements are themselves contested. Consider this: although patients complain about waiting lists, professional attitudes, and poor communication, few would question the enterprise of medicine itself. By contrast, psychiatry has always been thus challenged. Indeed, the concept of mental illness has been described as a myth.4 It is hard to imagine the emergence of “antipaediatrics” or “critical anaesthetics” movements, yet antipsychiatry and critical psychiatry are well established and influential.5 One of the largest groups of British mental health service users is called Survivors Speak Out. Psychiatry has reacted defensively …
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Strategies for Living
Article
  • May 2000
On the 13 March 2000 the Mental Health Foundation launched a groundbreaking report based on a three-year investigation of the ways in which people with mental health problems manage their own mental health. The project was funded by the National Lottery Charities Board.
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What do I want from health research and researchers when I am a patient?
Article
  • Jun 1995
I have attempted to adopt the perspective of a patient--albeit one with a rather atypical background--to explore what I want from health research and researchers. This has left me with the impression that health researchers could serve the interests of the public more effectively in a variety of ways, and that they would be helped to do so by greater lay involvement in planning and promoting health research.
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Medicine, postmodernism, and the end of certainty
Article
  • Dec 1996
“The Enlightenment is dead, Marxism is dead, the working class movement is dead and the author does not feel very well either.”1 I came across a curious word the other day—credicide. The death of belief. Not this or that one but all and every. Strictly speaking, of course, it means the active killing of belief rather than just its simple demise. Some dark agent has been out mugging belief in the night, jumping it, slicing it up while our eyes were turned to see what the arc lights of the media were bringing us this time. What is dying of course is not just Progress, Education, Science, Justice, or God—though all these do look anaemic shadows of their former selves. What is dying is the House of Belief itself. Down in the basement the machines are getting too cocky by half. The foundations are changing from carbon to silicon. Upstairs, uneasily aware that the world is changing in ways too deep to fathom, we race the newest technological wonder, work out in the gym, sniff encephalins, or tune into the latest version of reality. And deep in our hearts we suspect that it can only be a matter of time before the House of …
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