Papers
Systematic review of involving patients in the planning
and development of health care
Mike J Crawford, Deborah Rutter, Catherine Manley, Timothy Weaver, Kamaldeep Bhui,
Naomi Fulop, Peter Tyrer
Abstract
Objective To examine the effects of involving patients
in the planning and development of health care.
Data sources Published and grey literature.
Study selection Systematic search for worldwide
reports written in English between January 1966 and
October 2000.
Data extraction Qualitative review of papers
describing the effects of involving patients in the
planning and development of health care.
Results Of 42 papers identified, 31 (74%) were case
studies. Papers often described changes to services
that were attributed to involving patients, including
attempts to make services more accessible and
producing information leaflets for patients. Changes
in the attitudes of organisations to involving patients
and positive responses from patients who took part in
initiatives were also reported.
Conclusions Evidence supports the notion that
involving patients has contributed to changes in the
provision of services across a range of different
settings. An evidence base for the effects on use of
services, quality of care, satisfaction, or health of
patients does not exist.
Introduction
Over the past 20 years, governments throughout
western Europe and North America have encouraged
patients to contribute to the planning and develop›
ment of health services. In England and Wales the
involvement of patients is central to current efforts to
improve the quality of health care.1 Underlying these
changes is the belief that involving patients leads to
more accessible and acceptable services and improves
the health and quality of life of patients.2 3 This view is
endorsed by government policy, which states that
involving patients leads to “more responsive services
and better outcomes of care.”4
Several authoritative guides to different ways to
involve patients in the planning and development of
services have been published.3 5 6 Involving patients is
becoming less discretionary and more compulsory for
the providers of services, but engaging patients is not
an easy task, and no consensus on which methods are
most effective under different circumstances exists.4 We
therefore carried out a literature review to examine the
effects of involving patients and the circumstances in
which these take place.
Methods
We identified papers for possible inclusion by combin›
ing searches of electronic databases, hand searches of
reference lists of papers, contact with experts in the
field and groups of patients belonging to the national
Patients Forum, and a purposive hand search of grey
literature held at the King’s Fund and Department of
Health libraries. Electronic databases searched com›
prised medical literature (Medline from 1966, Embase
from 1988, PsychINFO from 1967), nursing literature
(CINHAL from 1982), healthcare management litera›
ture (HMIC and HELMIS from 1983), and grey litera›
ture (EAGLE from 1980). We used medical subject
headings and free text searches related to “user
involvement”—combinations of “client,” “consumer,”
“patient,” “user” and “empowerment,” “involvement,”
“participation,” “representation;” for those related to
planning and delivering health services—combinations
of “health,” “health care,” “health services,” “service,”
“welfare” and “delivery,” “development,” “organisational
delivery,” “organisational change,” “organisational
development,” “planning,” “provision.” Searches were
restricted to papers published in English between
January 1966 and October 2000.
Criteria for selection
We included papers that described the involvement of
patients, defined as “the active participation in the
planning, monitoring, and development of health
services of patients, patient representatives, and wider
public as potential patients.”6 We included all papers
that described the effects of involving patients in the
planning and development of health care. Excluded
papers described patient involvement in other
activities such as research, community development,
health promotion, self management and self help, and
the role of doctors and patients in determining
individual treatment choices. We also excluded papers
that described the measurement of patient satisfaction
or patient preferences without describing how this
information was used to help development of the
service.
Two researchers (DR and CM) independently
examined titles and abstracts of papers to decide if the
Department of
Psychological
Medicine, Imperial
College School of
Medicine, St Mary’s
Campus, London
W2 1PD
Mike J Crawford
senior lecturer in
psychiatry
Deborah Rutter
research associate
Catherine Manley
research worker
Peter Tyrer
professor of
community psychiatry
Department of
Social Science and
Medicine, Division
of Primary Care
and Population
Health Sciences,
Imperial College,
Charing Cross
Campus, London
W6 8RP
Timothy Weaver
research fellow
Institute of
Community Health
Sciences, St
Bartholomew’s and
the Royal London
Medical School,
London E1 2AD
Kamaldeep Bhui
senior lecturer in
social and
epidemiological
psychiatry
Health Services
Research Unit,
London School of
Hygiene and
Tropical Medicine,
London
WC1E 7HT
Naomi Fulop
senior lecturer in
health services
delivery and
organisation research
Correspondence to:
M J Crawford
m.crawford@
ic.ac.uk
bmj.com 2002;325:1263
BMJ VOLUME 325 30 NOVEMBER 2002 bmj.com page 1 of 5
full text articles should be obtained. Where there was
disagreement, this was resolved through consultation
with a third reviewer (MJC). Full text articles were then
examined and additional papers excluded if a more
detailed examination showed that papers did not fit the
study’s aims.
Qualitative analysis
When reading articles for inclusion in the review each
reviewer (DR, CM, or MJC) completed an annotation
form. This allowed the reviewer to describe the nature
of the evidence contained in the paper (quantitative
research, qualitative research, review of previous litera›
ture, case study, expert opinion), the context of involve›
ment (geographical setting, nature of the service, and
patient group), the method used (for example, survey,
patient representation at meetings), and finally
whether or not outcomes of involvement were
reported. Classifying papers in this way allowed us to
develop a series of categories represented by keywords
that were entered onto a bibliographic database and
subsequently used to search for papers illustrating par›
ticular themes. An initial examination of findings
showed that most papers that presented outcomes of
involvement were case reports from workers involved
in projects. Our approach to data analysis was
therefore restricted to a narrative account of outcomes
of involving patients and the nature of the evidence
used to support these claims.7 Because no system for
rating the quality of information in case reports exists,
we could not assign quality ratings to the papers we
included.
Results
We found 337 studies about involving patients in the
planning and development of health care. Of these, we
excluded 294 (87%) because they did not describe the
effects of involvement.
Accepted studies included 42 papers (12%) that
described the effects of 40 initiatives involving patients
(table 1). Of these, 31 were case reports, five were the
results of surveys, three examined records of meetings,
and three described the findings of action research.
Four reports clearly described the use of qualitative
research methods. We did not find any reports that
used comparative or experimental research methods.
Papers described a range of different models of
involvement applied in a range of settings in hospitals
and the community. The different effects of involving
patients and the nature of the evidence to support
these findings are summarised in table 2. We were
unable to identify any reports that investigated the
effects of involving patients on the health, quality of
life, or satisfaction of those using services.
Effects on users involved
Several papers commented that patients who partici›
pated in initiatives welcomed the opportunity to be
involved and that their self esteem improved as a result
of their contributions.8–14 The findings of surveys and
interviews with patients are in support.15 16 We also
identified reports in which patients described dissatis›
faction with the process.17 18 Several studies com›
mented that staff involved in initiatives found the
experience rewarding,9 19 20 but others describe difficult
relationships between patients and staff.21
Changes to services
Among the most frequently reported effects of involv›
ing patients was the production of new or improved
sources of information for patients.8 22–30 Other changes
included efforts to make services more accessible
through simplifying appointment procedures,26 30–32
extending opening times,24 29 31 improving transport to
treatment units,15 23 26 and improving access for people
with disabilities.8 26
Several reports describe new services being
commissioned as a result of the requests of patients,
including advocacy,24 27 initiatives aimed at improving
opportunities for employment,15 24 complementary
medicine,23 crisis services,16 and fertility treatments.32
Two reports describe how involving patients led to
proposals to close hospitals being modified or
abandoned.33 34
Other effects of patients being involved
Eight reports state that initiatives had a more general
effect on organisational attitudes to involving patients.
These included comments that staff attitudes to involv›
ing patients became more favourable 8 16 19 35 and that
the culture of organisations changed in a way that
made them more open to involving patients.27 35 Some
projects resulted in further initiatives aimed at
strengthening the involvement of patients.36 37 Con›
cerns were also expressed by researchers who found
evidence that involving patients was used to legitimise
decisions that would have been made whether or not
patients supported them.19 38–40 One report concluded
that the decision making process was slower because
patients were involved.18
Overall impact of involvement
Attempts to gauge the overall impact of involving
patients have been made by conducting surveys of par›
ticipants and retrospectively examining records of
meetings. A survey of the leaders of public involvement
initiatives of Health Systems Agencies in the United
States in 1980 asked respondents to judge the effects of
involving patients.41 42 Of the 154 (76%) who replied,
75% (116) said that involving patients had improved
the quality of health services and 46% (71) that it had
led to improvements in people’s health. Of 63 patient
participation groups in primary care settings surveyed
in Britain in the mid›1980s, 32 (52%) were able to
provide details of at least one change that groups had
initiated.31
Facilitated meetings between workers in primary
care and patients with diabetes in 17 primary care cen›
tres in Stockholm in the mid›1980s generated 196
plans for improving patient care. Eighteen months
later the extent to which plans had been implemented
was evaluated: 70% (137) of plans had been
implemented.29 A retrospective examination of records
from meetings of five mental health forums in Kent,
United Kingdom, identified 57 concerns raised by
groups over a two year period.43 Of these, 22 (39%)
resulted in a response from providers of services that
was judged acceptable.
Discussion
A review of more than 300 papers on involving
patients in the planning and development of health
care found that few described the effects of this
Papers
page 2 of 5 BMJ VOLUME 325 30 NOVEMBER 2002 bmj.com
Table 1 Reports providing details of the effects of involving patients in planning and delivering health care
Study Nature of evidence Form of involvement Nature of service Location Reported outcomes
Carlson and Rosenqvist29 Retrospective review of records Consultation meetings with 34 patients Diabetes management in primary care Sweden Changes to organisation of care and
information for patients
Milewa43 Retrospective review of records Five patient forums Mental health UK Unspecified changes to organisation and
delivery of services
Nutt50 Retrospective review of records Patient representation at 12 planning
meetings
Primary care USA Broad range of suggestions for changes
to services
Pilgrim and Waldron24 Action research Patient group with 14 members Mental health UK Extension of community mental health
team hours; advocate funded; service
information for users published
Sheppard9 Action research qualitative methods Meetings with patients at five general
practitioners’ practices
Primary care UK User involvement appreciated by
patients and providers
Taylor40 Action research Range of consultation projects across
all sectors and stakeholders
Learning disability UK Implementation of revised patient
information; patients’ input into
substantial overhaul of services
Bowl17 Telephone survey of 31 managers;
case studies
Patient forums Mental health UK Patient dissatisfaction
Checkoway et al41 Checkoway42 Survey of 154 service providers Patient representation at meetings General health USA Increased confidence of users who
participate; changes to services provided
Hendessi8 Survey of service providers London based patient groups and
forums
Broad range UK Changes in policy, quality and methods
of service delivery
NHSE32 Survey of service providers Mixed involvement initiatives Range of settings UK Simplified procedures; provision of new
services
Richardson and Bray31 Postal survey 63 patient participation groups Primary care UK Reorganisation of waiting rooms;
development of new clinics; changes to
opening times
Todd et al18 Interviews, qualitative analysis Patient and carer representation on
planning boards
Learning disability services UK User and carer dissatisfaction
Atkinson and Farshi51 Case study Audit involving interviews with 32
service users
Community paediatric UK Changes to dissemination of information
Barnes13 Case studies Three user groups Mental health UK Improved self esteem
Barnes52 Case study User committee Community care for physically disabled UK No changes implemented
Berger et al12 Case study Consumer committee HIV clinic Australia Patient friendly services and support;
improved self esteem of patients
Broderick33 Case study Survey of 140 people by CHC General health UK Reversal of plan to close hospital
Dixon et al53 Case study Two patients employed as consumer
advocates in assertive outreach team
Mental health USA Improved engagement with patients and
staff awareness, but problems with
boundaries
Elizabeth14 Case studies Three citizens’ juries General health UK Increase in participants’ self confidence
and interest in local democracy
Gummer and Furney27 Case study Staff›patient forum: patients represent
six groups
Mental health UK Improved design of new services; plan
for advocacy; improved information,
training and recruitment; culture shift;
increased user self esteem
Harris37 Case study Patient forum Mental health UK Promoted further user involvement
Harrison and Mort39 Case studies Health panels run by CHC General health UK Little evidence of changes to services
Heginbotham34 Case studies Range of initiatives including campaign
by CHCs
Broad range UK Reversal of plan to close hospital
Kirk et al38 Case studies Range of initiatives including interviews
with service users
Primary care UK Supported existing plans for expansion
of services
Lord et al16 Case study with qualitative methods Stakeholder meetings including service
users
Mental health Canada Shift in service delivery toward
individualised care; broader based
ownership and control
Millet28 Case studies Survey of 120 patients and three focus
groups
Medical outpatients UK Development of information and shared
care record book
NHS Executive25 Case studies Mixed methods (surveys, meetings) General health UK Impact on strategies unclear; some
service improvements, better
communication with local residents
Pagett26 Case study Service users panel Medical outpatients UK Patient information and appointment
cards revised; disabled facilities
improved
Pecarchik et al54 Case study Health and welfare council General health care USA Pressure from service users speeded up
changes to organisation of blood banks
Poole20 Case study User focused monitoring* Neurological disorder UK Patients and staff found user
involvement rewarding
Sheahan55 Case study Survey of discharged patients General hospital care Australia Development of information booklet
Silva11 Case study Client group to plan respite facility Mental health USA Clients directed service design; became
volunteer staff; reduced dependency
Smith10 Case study Ex›client representation at meetings,
survey of current clients
Mental health USA Promotion of rehabilitation through
enhanced self worth, self reliance
Summers and McKeown19† Case study Mixed: focus groups, consultation,
interviews, patient survey, and CHC
Maternity services UK Strategy reflects call for more
linkworkers; better catering; staff
interest in user views stimulated
Summers and McKeown19† Case study Mixed: focus groups, user forum,
survey of voluntary organisations, and
CHC
Mental health UK Improved self esteem for users; staff
interest in user views stimulated
Tishler56 Case study Consumer board overseeing service
providers
Mental health USA Training for staff on patient needs
Williams30 Case study Patient and staff interviews; survey Outpatient services UK Waiting times, notes retrieval, patient
information, and feedback to patients
improved
Wistow and Barnes,15 Barnes and
Wistow,35 and Barnes and
Wistow36
Case study with qualitative methods Survey, citizen advocacy, meetings Community health and social care UK Improved access to services; enhanced
self esteem of users who participated;
service provider became more open to
user involvement
Woods23 Case study Questionnaire survey Surgical inpatient UK Revised admissions and discharge
procedures and information; improved
ancillary services; complementary
medicine; liaison group established
Young21 Case study Lay board of directors controlling a
primary care clinic
Primary care Canada Dissatisfaction among service providers
CHC=Community Health Council.
*A form of quality assessment by service users. †Two separate case studies in one report.
Papers
BMJ VOLUME 325 30 NOVEMBER 2002 bmj.com page 3 of 5
process. Those that have done so are generally case
studies where project administrators running projects
have commented on what the project achieved.
Although these reports support the view that involving
patients has contributed to changes to services, the
effects of involvement on accessibility and acceptability
of services or impact on the satisfaction, health, or
quality of life of patients has not been examined.
We found some of the most informative material
for this review in grey literature. While we made
considerable effort to locate grey literature, the
methods we used would not have identified all reports
on this subject, especially those from outside the
United Kingdom. Another potential problem in inter›
preting the results is that publication bias may favour
the publication of reports from initiatives that were
judged to be successful.
Several factors may account for our central finding,
the limited amount of information about the effects of
involving patients. The aims of involving patients have
always been broader than just improving the quality of
health care. Involving patients has been viewed by
many as a democratic or ethical requirement: because
patients pay for services they have a right to influence
how they are managed.44 45 An alternative view is that
involving patients is not intended to devolve power to
patients but to legitimise the decisions of policy makers
and administrators.46 It is argued that through consult›
ing with users of health services, support for decisions
that would otherwise be unpopular can be obtained.47
Such aims imply that establishing mechanisms for
involving patients should be seen as an end in itself
rather than as a means of improving the quality of
services. However, initiatives that fall short of bringing
about changes to services are not in keeping with the
aims of current policy or patients.
The effects of involving patients are likely to be
complex, affecting different aspects of services in
different ways. The views of patients are among many
factors that influence change in health services, and
providers of health care remain the final arbiter of how
much weight is attach