J R Soc Med 2001;94:375-377
© 2001 Royal Society of Medicine
Involving patients and the public—is it worth the effort?
Ruth Chambers DM FRCGP
Staffordshire University Centre for Health Policy and Practice, Primary
Care Development, School of Health, Leek Road, Stoke-on-Trent ST4 2DF,
UK
E-mail:
r.chambers{at}staffs.ac.uk
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INTRODUCTION
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Should patients and the public be involved in planning and delivery
of
healthcare and services; is it worth the effort? Faced with
this question,
most professionals feel frustrated that they
cannot meet current demands and
wary of asking patients what
else they want. They do not appreciate the
potential advantages
of responsible involvement. The question cannot properly
be
answered without some clarifications.
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DEFINITIONS
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- The definition used by the NHS R & D Standing Advisory Group on
Consumer Involvement for patients and the public is a wide one. It
was constructed with input from consumers and people representing consumers,
health service personnel, academics, and others. Consumers are defined as
‘patients and potential patients, carers, organizations representing
consumers’ interests, members of the public who are the targets of
health promotion programmes and... [those individuals and groups who are]...
exposed to potentially harmful circumstances, products or
services'1.
- Next, to whom is the question being addressed? The effort expended
will vary depending on whether we are considering that question from health
professionals' or managers' perspectives, from an organizational viewpoint or
that of the patient or citizen or public group taking part in the
exercise.
- What does involve mean? This word is used by many in the NHS as an
umbrella term for any of the following: ask for views, consult, participate,
share decisions in partnership about planning and delivery of healthcare and
services. It is variously applied to exercises with the local community or to
engagement at an individual level that results in greater equality in
decision-making in clinical management between the patients and the health
professionals they are consulting. This equality of relationship is sometimes
described as a state of ‘concordance’ where the patient is
sufficiently well informed and respected to reach a negotiated agreement with
the doctor, nurse, pharmacist or therapist. A contrasting situation is where a
patient is in a relatively disempowered state, and the treating health
professional expects ‘compliance’ with the prescribed regimen.
- And effort—what exactly is that? This will include the
skills and resources necessary to undertake an involvement exercise in a
meaningful way, from the staff's perspective and the patient's or general
public's perspectives. The staff aspects will include:
- Awareness of the importance of patient and public involvement; when and how
it can be incorporated in their everyday work
- Skills to organize an initiative, select the right method for the purpose,
gather or supply good quality information, listen and respond to the
feedback
- A managerial overview—strategy, policies, programme planning, links
with other organizations to reduce duplication and fill gaps, links across the
other components of clinical governance, links with health needs, training of
staff and patients/public, and the quality of the exercise.
The resources will include the time and money spent on actually
considering, planning, undertaking, analysing and disseminating, evaluating
and re-evaluating, training and informing staff and patients/public. Then
there are the costs of the venues, surveys and initiatives. Some examples of
these expenses are citizens' juries costing up to £30 000, a health
panel spanning a district which might cost around £6000 per year, or a
postal survey of 250 people which could cost around £2000. There are
opportunity costs too, since involvement and participation is time and energy
consuming work2.
The patients' aspects will include:
- Spending time participating in a consultation or in any decision-making
process, including time away from work or caring for dependents
- Time to become familiar with the jargon and understanding the way the
service operates, so as to participate usefully in prioritizing exercises;
learning and practising these skills.
- Finally, is it worth it? The answer must depend on the topic, the
need and the extent of the effort. If you are in an executive position, your
job security probably depends on supporting or organizing user involvement and
participation (for example, by implementing the NHS Plan or clinical
governance, or responding to scrutiny by the Commission for Health
Improvement). If you are a patient it might be worth the effort if you will
reach a more informed choice in selecting alternative treatments at an
individual level or have a better understanding of the issues leading to
improved adherence to a prescribed regimen. If you are a doctor or nurse, the
effort may be worth it, if the involvement exercise enables you as a person or
a practice or department to identify patients' needs and change the service
accordingly. That might result in health gains for the target patients, or
less wastage of resources.
Even with these definitions you still cannot answer the question about
whether user involvement or participation is worthwhile because it is too
wide. We should be more explicit since the ‘effort’ involved in
asking a few patients their views concurrently with their using the Health
Service is dwarfed by the effort of involving people not using the service, or
the local population in general. To train service users so that they
understand complex health issues and can share in informed decision-making at
all levels, or to gather the views of people in hard-to-reach groups such as
the homeless, is difficult and time-consuming. The overall effort includes
processing and responding to patients' feedback and experiences, then
implementing changes and re-evaluating the subsequent quality of
healthcare.
So the answer to my question ‘Patient and public involvement—is
it worth the effort?’ is ‘it depends’. It depends on:
- Whether the purpose is clear
- Whether there is a culture of listening to patients and the public and
being responsive, so that the information arising from involvement will be
acted upon rather than ignored
- Whether there is an established systematic approach to gathering patients'
and the public's views and incorporating the information into everyday
practice and policy, rather than an occasional ad-hoc exercise
- Whether the methods and resources needed to collect and process the
information are commensurate with the importance of the issues being
considered, and the potential health or other gains
- How important it is to get a truly representative opinion or whether a
small sample will be sufficient
- Whether there is time built in for reflection: Box 1 illustrates the
importance of this.
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THE EVIDENCE
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Although there is not much formal evidence that user involvement
is
advantageous we would expect this to be so: responsiveness
to people's
perceived needs, values, beliefs and preferences
should mean that healthcare
and services are more relevant and
there is less wastage of resources.
Involvement of lay people
in training those in the NHS should make staff more
sensitive
to people's individual needs and concerns. Involvement of the
public
in making decisions about allocating resources should
result in their greater
‘ownership’ of decisions
about the limitations to the NHS. What
evidence there is, though,
is mainly anecdotal. Here are some examples of
positive outcomes
arising from involvement or consultation exercises.
| Box 1 Effect of discussion and deliberation on views of focus
group participants (from Ref.
3)
Sixty patients from two urban general practices in North Yorkshire each
attended two focus group meetings, two weeks apart. The participants' views
about setting priorities in healthcare changed substantially between the
beginning of the first meeting and the end of the second, after they had been
given opportunities to discuss the issues and had had time for personal
reflection. About half of the participants initially wanted to give lower
priority to smokers, heavy drinkers and illicit drug users receiving
healthcare, but by the end of the second meeting about one-third of these no
longer wanted to discriminate against such people.
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First, a national public consultation: in 1997 the Human
Fertilization and Embryology Authority consulted the public and specialist
fertility centres about the abolition of payments to egg and sperm donors.
They consequently delayed for the foreseeable future their anticipated plan to
ban payments, because of the counter-arguments put by the general public and
fertility centres that such a ban would mean that sperm and egg donor supplies
would substantially diminish.
Second, empowerment of individual patients so that they take more
responsibility for their clinical condition: a systematic review of randomized
controlled trials indicates that education to facilitate self-management of
asthma in adults reduces hospital admissions, unscheduled visits to the doctor
and days off
work4.
Third, a local example: a patient participation group in a rural
practice has worked with representatives of the practice team to improve
coronary heart disease care. One result was that the local parish council
devised country walks of varying distances, described in leaflets available in
the practice's waiting room; the practice has arranged group walks for
patients.
Fourth, younger user involvement: young people were randomly
sampled from ten of the eighteen general practices in South Stoke Primary Care
Group. They were sent a postal questionnaire asking them about their
experiences of consulting at their GPs' surgeries and how services might be
improved, especially with respect to sexual health services. Half of the 32
who replied agreed to come to a focus group, which was held at a local sports
centre. In the event, 12 attended and gave detailed views about how access to
primary care might be altered so that services were more convenient and less
offputting for young people as a whole.
Because so little genuine involvement and consultation has been undertaken
in the NHS the evidence in favour of this approach is sparse. More compelling
is the evidence of harm when potential users are not consulted on planning or
delivery of healthcare and services:
- New services are introduced that are unwanted or inconvenient for the
target population
- Health services that are wanted and needed by the general public are not
provided at the right time or place
- There is a lack of take-up if those for whom the services are available are
unaware of the existence of the services or of the evidence that justifies
their use
- Health services are duplicated by various different healthcare
providers
- The priorities of the community and health service planners do not
coincide.
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RESISTANCE
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Although user involvement is central to many of the UK Governments'
national
planning documents for the health services, the reality is different.
Health
organizations hold meetings termed ‘public consultations’
where
a few members of the public attend to hear about decisions that
have
really already been made. Strategic working parties offer
rhetoric on user
involvement and public consultation but absolve
themselves from the effort
with such riders as ‘I for
one don't know anyone’, ‘they
would be bored’,
‘they wouldn't know as much as we do about the
issues’,
or ‘we are all patients really’. Grassroots staff
are
still anxious that involvement of users will mean patients asking
for more
services or impossible changes.
If we are to appreciate the advantages of user involvement and
participation we need to look outside the Health Service to other public
service organizations that have more skills and experience in the matter. A
recent postal survey looked at the extent to which various organizations
encouraged young people to give their views or participate in decision making.
The health sector was just as likely as the other sectors (education, local
authorities, youth and community and voluntary) to encourage young people to
give their views, but was much less likely to involve them in decision-making
(Chambers R, Linnell S, unpublished). When looking at primary care in
particular, eleven of the respondents from the twenty-eight general practices
encouraged young people to give their views about the way services were run or
provided; whereas all twentysix youth clubs and projects and all but one high
school did so. Only six general practices involved young people in
decision-making, compared with three-quarters or more of the youth clubs and
high schools and two-thirds of voluntary groups. Similarly, general practices
were significantly less likely to have made changes to policies or procedures
as a direct result of young people's views or contributions.
So, is involvement of patients and the public worth the effort? In theory
the answer is yes, and there are good examples from practice; but we still
await the evidence.
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REFERENCES
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-
NHS Executive. Research: What's in it for
Consumers? London: NHS Executive, 1998
-
Chambers R. Involving Patients and the Public. How to Do
it Better. Oxford: Radcliffe Medical Press,2000
-
Dolan P, Cookson R, Ferguson B. Effect of discussion and
deliberation on the public's view of priority setting in healthcare: focus
group study. BMJ1999; 318:916
-19[Abstract/Free Full Text]
-
Gibson PG, Coughlan J, Wilson AJ, et al. Self-management
education and regular practitioner review of adults with asthma.
Cochrane Library, Issue 4 1999:1
-12
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TOP
INTRODUCTION
DEFINITIONS
