Memorandum from the Healthcare Commission
SUMMARY OF
KEY POINTS
— The Healthcare Commission has a key
role in promoting the engagement of users of services and members
of the public in decisions about the NHS and health services.
We give high priority to incorporating patient experience into
all areas of the regulatory assessment system. Public and patient
involvement helps us to ensure that people get high quality services
that meet their needs.
— We currently do this through:
— our patient survey programme, which
feeds into our annual ratings;
— consulting patient groups on how
well they believe Standards for Better Health are being met, thus
involving patients and the public formally through our assessment
processes;
— seeking input from patient groups
to our work programme, both in general terms and in consulting
users of services when we look at a specific issue such as learning
disabilities or services for older people; and
— learning from complaints made against
the NHS, as demonstrated by our report into complaints, which
will be published soon.
— We recognise that these methods still
need to be developed and expanded.
— We believe patient experience is
very important for assessing healthcare and that the NHS is caring
but still not sufficiently user focused. The Healthcare Commission
want to be in the vanguard of developing methods for understanding
and measuring patient experience so as to improve overall healthcare
in this country.
INTRODUCTION
The Healthcare Commission welcomes the opportunity
to respond to the Public Administration Select Committee's inquiry
into Public Services: putting people first?
The Healthcare Commission was created under
the Health and Social Care (Community Health and Standards) Act
2003. We exist to promote improvements in the quality of healthcare
and public health in England, and have a wide range of responsibilities,
aimed at improving the quality of healthcare provided to patients.
We have a statutory duty to assess the performance of healthcare
organisations, award annual performance ratings for the NHS and
coordinate reviews of healthcare by others. We are committed to
making a real difference to the delivery of healthcare and to
promoting continuous improvement for the benefit of patients and
the public.
1. Can public services learn from the way
that either non public sector organisations or overseas governments
make use of user experience in service delivery and design?
1.1 The Healthcare Commission works closely
with a wide range of voluntary organisations representing patients
and the public. It involves these organisations and their members
in planning and delivering the Commission's regulatory functions,
and also in assessing the performance of healthcare organisations.
Using this experience, we can confirm that much can be learned
from the way these organisations integrate user experience in
the design and delivery of services. Key lessons include:
1.1.1 It is helpful to assume that users
of services are experts in managing their condition/circumstances,
and that their expertise is an essential resource, without which
services cannot be designed or delivered effectively.
1.1.2 Our users of services are valued partners
in the enterprise of service design and delivery, not just recipients.
1.1.3 Building on the concept of membership,
users of services should be involved in ways that recognise and
respect their agency, and their right to be actively engaged in
the work of the organisation.
1.1.4 Where possible, users of services can
participate in the delivery of services, often with therapeutic
effects. However, this approach needs to be based on a finely
tuned—and individualised—understanding of when such
participation becomes burdensome to the user and thus counterproductive.
1.1.5 Users of services can benefit from
learning from and supporting one another, for example in small
"self-help" or "mutual aid" groups. Health
professionals can sometimes achieve more by helping such groups
to function effectively than by providing services directly.
1.1.6 Where users of services are involved
in decision making with professionals, it is vital to recognise
the ways in which users can feel confused, embarrassed or silenced
by the bearing and behaviour of professionals. A range of tactics
can help to avoid these effects, such as involving users in groups
rather than individually, careful facilitation of discussions,
introducing advocates, training professionals in appropriate behaviour
and avoiding jargon.
2. Is it possible to set minimum standards
for public services? If so, how is this best done?
2.1 Standards for Better Health, published
by the Department of Health in 2004, specifies 24 core standards
that are to apply wherever NHS care is provided. The core standards
are described as requiring a level of service which "must
be universal", and it was made clear that compliance was
"not optional".
2.2 The standards aim to be comprehensive
in their coverage of NHS activity and achieve this by being drawn,
generally, at a high level. In this they differ from other specifications
of the services to which patients are entitled—which tend
to focus on specifics, such as the maximum acceptable waiting
time for a particular service. We have found the following advantages
and disadvantages to this high level approach:
— by being general and comprehensive,
the standards reduce the risk of introducing perverse incentives
for those seeking to comply with minimum standards—there
may be several ways of hitting a specific waiting time target,
not all of which may be of overall benefit to patients. A general
standard that patients be treated "promptly" expresses
something that is inherently desirable;
— high level standards allow for appropriate
local interpretations of basic or minimum requirements. Thus a
healthcare provider serving a population with particular demographic
characteristics could argue that while they did not meet a detailed
national specification, they still provided a tailored level of
service that met the specific needs of their population; and
— as the minimum standards are open
to local interpretation, they may also be open to misinterpretation.
Where a minimum standard lacks detailed quantitative specification,
the judgement as to whether compliance has been achieved is necessarily
of a subjective nature. This is an issue that provides challenges
not only for the healthcare provider, but also for the regulator.
However, the Healthcare Commission's first annual assessment of
the extent of NHS trusts' compliance with the core standards provides
evidence that these difficulties may be overcome. We believe that
the assessment has been largely successful in establishing a common
understanding, between trusts and regulator, as to what compliance
means. It has also been a public process, in which each trust
was obliged to make a declaration of its compliance (or lack of
it) to the regulator and the population it serves.
2.3 This raises a question of the extent
to which the public understand the core standards. While our assessment
process will have raised the profile of the standards, it remains
our perception that there is a relatively poor public appreciation
of these entitlements, and that this may reduce the effectiveness
of the standards as a tool for ensuring acceptable care for all.
3. What role do measures of customer satisfaction
have in assessing the standards of public services? How should
user views be monitored? How can the cost effectiveness of user
surveys and feedback mechanisms be assessed?
3.1 The Healthcare Commission is responsible
for a national programme of surveys designed to capture the views
of representative samples of patients and users of services. Our
role includes determining the content of the survey programme,
commissioning the development of individual surveys and overseeing
their subsequent analysis and reporting. The surveys themselves
are coordinated by three coordination centres contracted to the
Commission. Local implementation is, for the most part, undertaken
by approved contractors. This investment is based on the assumption
that asking patients who have recently used the health service
what they think about the care and treatment they have received
is an important step towards improving the quality of care, and
to ensuring that local health services are meeting people's needs.
To date, approximately 1.2 million patients have participated
in the NHS national patient survey programme.
3.2 What role do measures of customer satisfaction
have in assessing the standards of public services?
3.2.1 NHS trusts have been made more accountable
by the requirement that they measure patients' experiences, and
that comparative information about performance is published. The
NHS Plan1 declared the Government's commitment to ensuring that
patients and the public have a real say in how the NHS is managed.
It promised that every NHS trust would carry out a survey of patients'
experiences on an annual basis. Subsequently, the Health and
Social Care Act 2001 8 also placed a duty on all NHS Trusts to
involve and consult patients and the public.Gathering patient
experience through surveys is now widely accepted as a key indicator
of healthcare performance and one of the four national priority
areas for healthcare. In 2004, the Department of Health published
"Secure sustained national improvements in NHS patient experience
by 2008, ensuring that individuals are fully involved in decisions
about their health care, including choice of provider, as measured
by independently validated surveys". The trust-based programme
of national patient surveys began in 2002. Since then, surveys
of patients covering all eligible NHS trusts in England have taken
place in primary care trusts, mental health, ambulance trusts
and acute and specialist trusts. In acute and specialist trusts,
the inpatient survey was repeated in 2004, 2005 and 2006, emergency
department surveys were carried out in 2003 and 2005 and outpatient
surveys in 2003 and 2005. Children and young inpatients (aged
0-18) were also surveyed in 2004. Surveys have also taken place
in primary care trusts (PCTs) in 2003, 2004 and 2005 and annually
in mental health trusts since 2004. Ambulance trust surveys of
patients were carried out in 2004.
3.2.1 The results of the surveys are used
for two main purposes; locally, they can help to direct quality
improvement programmes and centrally they are used to calculate
the patient focus performance indicators that contributed to the
star ratings in 2002, 2003, 2004 and 20059,10,11 and which are
now used in assessing performance through the annual health check.
3.3 How should users' views be monitored?
3.3.1 The procedures we have used for developing
the questionnaires and survey methods are described below, and
the rationale for the procedures used in the national patient
survey programme is explained.
3.3.2 Design of questionnaires—when
the national patient survey programme was designed, it was recognised
that there were shortcomings with the patient satisfaction questionnaires
that had traditionally been used to gather patients' views. 12
The approach to designing survey tools described has also been
adopted for the Consumer Assessment of Health Plans (CAPHS) surveys13
in the USA and the WHO responsiveness surveys. 14
3.3.3 Reflecting patients' priorities—one
of the problems with earlier patient surveys was that they were
often designed with little or no input from patients. They tended
to focus on the issues that managers or clinicians believed were
important, rather than reflecting patients' priorities.
3.3.4 Focus groups and interviews with patients—the
current surveys of patients have been designed using a "bottom-up"
method. The starting point was qualitative work (focus groups
and individual interviews) with patients who had recently experienced
those services. Patients were asked to describe their healthcare
experiences in their own terms. From patients' accounts, it was
possible to build a picture of the issues that are important to
them, the steps and procedures that could go wrong, and the language
commonly used by patients themselves. For example, patients often
say that doctors and nurses "talked in front of them as if
they were not there". This can be upsetting for patients
as it demonstrates a lack of respect from clinicians. Furthermore,
such attitudes can exclude patients from information that they
have a right to hear, and which could be helpful to them in taking
an active role in optimising their own health and healthcare.
Therefore, questionnaires designed in this way often include an
item, "Did [doctors/nurses] talk in front of you as if you
were not there?". When these results are fed back to clinicians,
they are often surprised to learn that around 20-30% of patients
report that this happened to them. It is unlikely that a questionnaire
designed by clinicians and managers alone would have identified
this important issue.
3.3.5 "Importance" surveys—as
an extra check that questionnaires reflect patients' top priorities,
"importance" studies have been carried out for many
of them. 15,16,17,18 Patients are given a list of 30-60 aspects
of their care, such as "getting clear explanations about
my treatment", "clean ward" and "not having
to wait too long for admission". They are asked to rate each
item as "very important", "quite important"
or "least important". The results are used to check
that the survey tools focus on the issues that are most important
to patients. There was a considerable degree of agreement among
the issues rated the most important for a number of different
care settings. Among the top six issues for more than one of the
settings are:
— confidence and trust in healthcare;
— being involved in decisions;
— being treated with respect and dignity;
It is useful to include topics that might not
seem important, but that policy makers, stakeholders or special
interest groups might want to prioritise. When questionnaire space
is at a premium, it is useful to refer to this exercise to decide
which questions should be included.
3.3.6 Problems with "satisfaction"
ratings—traditional surveys often asked patients to rate
their satisfaction with their care. For example, "How satisfied
were you with [an aspect of] your care?" or, "How would
you rate the care you received?" using Likert-type scales
(excellent/ very good/good/ fair/ poor). Responses to these questions
are often used for marketing purposes because they provide evidence
for statements such as "90% of our patients were satisfied
with the care they received". However, the uniformly positive
ratings elicited by such questions make it difficult to distinguish
between organisations, and they do not give clear information
on where problems exist and what needs to be done to improve services.
Another problem with satisfaction ratings is
that the breadth of the concept of satisfaction makes it difficult
to interpret results. Satisfaction ratings reflect other factors,
not just from the standard of care received. 19 They are affected
by the patient's personal preferences, expectations and usual
response tendencies. To obtain accurate assessments of patients'
experiences, it is important to minimise the effect of these biases.
3.3.7 Reporting patients' experience—instead
of asking patients to rate their satisfaction with their care,
the questionnaires used in the national patient survey programme
ask more specific questions about what happened during the patient's
recent care. For example, they are asked "How long did you
wait to be seen?" and "Did you share a room or bay with
patients of the opposite sex?" This style of question focuses
more specifically on the facts about the patients' experiences.
Furthermore, by focusing on the details of patient reports, rather
than ratings, feedback is more actionable: it offers a better
idea of what needs to be done to improve patient care. 19
3.3.8 Readability—to maximise the
accessibility of the survey, the wording of questionnaires is
designed to be understandable to people with lower reading ages,
or whose first language is not English. Before a questionnaire
is formally piloted, a draft version is tested with patients in
a series of cognitive interviews. Patients and researchers look
at the questionnaire together, checking that patients' understanding
of questions is the same as the researchers' and that the questionnaire
is appropriate and acceptable to them. It is then redrafted as
many times as necessary, until no further changes are needed.
A pilot survey is then carried out so that any questions patients
may find difficult to answer are highlighted. As with the exploratory
qualitative work, the questionnaires are tested with patients
with a broad range of demographic characteristics.
Another feature that makes it easier to complete
the questionnaire is that they are designed to follow the typical
chronological sequence of patient experiences. For example, inpatient
questionnaires begin with questions about the admission process
and end with departure from the hospital.
3.4 Survey methods
3.4.1 Sample sizes—for all our surveys,
the initial sample size for each trust is 850 and, for most, average
response rates are around 60%. These sample sizes make statistically
reliable comparisons between trusts feasible. Shortly after the
completion of each survey, trusts are provided with benchmark
information about their performance on most of the survey questions.
In most surveys, trusts also have the option of increasing the
sample size above the minimum specified. They might want to do
this to facilitate analysis of, for example, different hospitals
within the organisation or different departments within a hospital.
3.4.2 Postal surveys with reminders—the
national survey programme in England has always been conducted
using postal surveys. There are a number of practical advantages
to this approach. Costs are relatively low (see section 3.5.1),
and it is easy to standardise the methods.
The broadest range of patients is reached using
a postal survey. While there are concerns that they are not ideal
for some groups (such as those with low literacy levels, the partially
sighted or those for whom English is not their first language),
this method allows a large majority of patients to give feedback
at their own convenience. They do not discriminate against patients
who do not feel confident or able to give their views at public
meetings, in discussion groups, by writing letters or making a
complaint.
An important part of the strategy to maintain
good response rates is to send two reminders to people who do
not respond. However, in some settings, such as primary care and
mental health, response rates are not as good as in acute trusts.
NHS trusts in inner cities also tend to achieve poorer response
rates. More research needs to be done to determine the reasons
for people not responding, but there is evidence that out of date
or inaccurate patient contact details are partly responsible.
3.4.3 Representative sampling—for
a survey to provide useful and credible feedback to healthcare
providers, it must be based on representative samples of patients.
There are not many people excluded from the samples used for the
national survey programme. The exceptions are patients for whom
the questionnaire would not be appropriate (such as children)
or patients for whom very sensitive issues might be raised (for
example, those for who have undergone a termination of pregnancy
are usually excluded). This approach reduces the risk that trusts
will introduce bias into the sample by excluding patients inappropriately.
3.4.4 Recent users or recent experiences?—it
is important that results of surveys are based on responses from
recent users of the health services. Managers and clinicians are
likely to take results less seriously if they believe them to
be out of date24. Patients who have had a hospital experience
are surveyed shortly afterwards and they are asked specifically
to report on the last time they attended that hospital. Where
samples are based on a patient being on a register rather than
on their recent healthcare contact (such as for the primary care
and mental health surveys), responders are prompted to report
on what happened during their most recent experience or to think
back over a specific recent time period—usually the last
three or six months.
3.4.5 Standardised procedures—the
credibility and usefulness of the survey results depends on them
being carried out according to standard procedures in all NHS
trusts, so that comparisons are reliable and meaningful:
— Questionnaires and covering letters—all
questionnaires for the national survey programme are made available
to NHS trusts in PDF format to minimise the chances that mistakes
will be made when transcribing questions. Trusts are also required
to use standard covering letters with all of their mailings, and
they submit copies of these, and of their questionnaires, as part
of the validation process. These documents are carefully checked
for quality and consistency.
— Sampling procedures—all trusts
are given identical detailed instructions on how to draw the sample
of patients for inclusion in the survey. There is a risk with
a devolved survey such as this that staff will not read guidance
carefully. Therefore, the simpler the procedures, the greater
the chance the instructions will be followed properly. Where possible,
consecutive rather than random sampling is prescribed, since it
is easier to carry it out without making mistakes.
The guidance notes for carrying out the survey
emphasise the importance of following correct sampling procedures
and of ensuring that the person that carries out this work is
properly supported. Furthermore, information about the samples
of patients from different organisations is compared so that any
anomalies can be highlighted and investigated. For example, where
patient ages in one trust differ significantly from the average,
further checks are carried out to ensure that the trust has sampled
its patients correctly.
3.4.6 Managing a devolved survey programme—the
success of the programme depends upon the careful balancing of
sometimes competing aims. The advantages of trusts having a sense
of local ownership through their direct involvement with the surveys
need to be weighed against the requirement that the standard procedures
described above are correctly followed. Over-zealous policing
of the surveys can create a sense that the surveys are a top-down
imposition, which hinders trust staff from taking ownership of
the findings. Alternatively, if inter-organisational comparisons
were perceived to be unreliable, the surveys would be devalued.
This programme is managed centrally by the Healthcare
Commission, and coordinated by the survey coordination centres.
However, many of the responsibilities for ensuring that it is
correctly implemented are devolved to NHS trusts. The practice
of trusts themselves having substantial input and a degree of
independence is justified because they pay for the surveys themselves.
A few of them carry out all the survey work themselves, while
others appoint contractors from a list approved by the Healthcare
Commission. The trusts, or their approved contractors, draw the
patient samples, send out questionnaires, enter questionnaire
data and ensure that a clean data set is submitted by a deadline.
3.4.7 Publishing results—the survey
results for each trust on each question are published shortly
after the survey has been completed. They are able to compare
their results with those of other trusts and they can identify
those areas where there is most room for improvement. It is, however,
important to balance the need to stimulate quality improvement
withensuring that the poorer-performing trusts are not disheartened.
3.5 How can the cost effectiveness of user
surveys and feedback mechanisms be assessed?
3.5.1 Costs of alternative survey methods—the
cost per patient of carrying out a postal survey is currently
approximately £3.00. This is considerably lower than when
the survey programme began in 2001-02 with a cost of approximately
£10 per patient. The cost per patient of carrying out a telephone
survey is approximately £21. 20 The cost per patient for
carrying out face-to-face interviews is between £100 and
£150.
3.5.2 Recent research on the value of patient
surveys—a few recent studies have examined the strengths
and weaknesses of patient surveys in promoting quality improvements:
— Davies and Cleary21 conducted indepth
interviews with 14 senior health professionals and managers in
Minnesota, USA.
— In 2005, YouGov carried out a panel
survey of 409 healthcare leaders working in UK NHS trusts for
the Health Foundation22, investigating views on patient experience
measures.
— In 2005, Dr Foster conducted research
for the Department of Health23 in eight acute NHS trusts.
— In spring 2006, Reeves and Seccombe24
interviewed 24 survey leads in acute trusts about the factors
that inhibit or promote the use of results of surveys to make
quality improvements.
— Research on acute trusts' views on
the surveys is currently being conducted by the Acute Surveys
Coordination Centre, which is funded by the Healthcare Commission.
25These studies have identified the issues below as factors that
promote or inhibit the use of patient survey results to make quality
improvements.
3.5.3 Factors that promote the use of the
results of patient surveys:
— a patient-centred culture in the
trust; 24
— the importance of the results of
the survey in the Healthcare Commission's performance assessments;
24
— leadership by senior members of the
organisation; 21,24
— the persistence of quality improvement
staff in demonstrating change; 21
— boosting staff morale with positive
survey findings; 24
— using the results for action planning;
24
— benchmarking against others; 24
— confidence in the quality of the
questionnaires and survey methods; 24 and
— repeating the surveys regularly to
make comparisons over time. 24
3.5.4 Barriers to using the results of surveys:
— perceived lack of specificity of
results (such as they cover too wide a range of services/ are
not specific enough to departments); 21,22,24
— limited understanding of statistical
methods; 21,24
— delays in disseminating survey data;
21,24
— lack of expertise or knowledge of
effective interventions; 21,22,24,5
— lack of time for clinical teams to
discuss the results; 22,24
— low priority given to using survey
results within the NHS; 22
— scepticism among clinicians about
the validity and importance of the surveys; 22,24
— lack of leadership by clinicians
in using the results; 22
— lack of notice from the Healthcare
Commission about forthcoming surveys; 24 and
— delays in publishing the results.
24
3.5.5 Criteria for success—the criteria
against which the success of various measures of the experience
of patients could be assessed might be summarised as follows:
— does it accurately measure the experience
of patients and cover the issues that are important to patients?
— do organisations trust and use it?
— does it allow reliable comparisons
among trusts?
— is the feedback timely?
— do trusts know what to do with the
results?
— do all types of patients have an
equal chance of being heard?
— is it sensitive to change? (for example,
do the results change when things get better or worse?)
— do trusts that use it do better than
those that do not?
3.5.4 The strengths and weaknesses of the
national patient surveys against these criteria have been assessed
and a summary from the Healthcare Commission can be made available
to the Committee on request.
4. What constitutes best practice in responding
to complaints about public services?
4.1 The Healthcare Commission is responsible
for reviewing formal complaints about the NHS that have not been
resolved locally by the NHS organisation involved. When reviewing
complaints, we aim to be independent, consistent, timely and fair.
We also aim to ensure that, as far as possible, complaints are
dealt with satisfactorily at a local level.
4.2 In our experience, it is important that
complaints be accepted as an opportunity to improve services.
Each complaint should be acknowledged quickly and followed up
appropriately. A member of staff who is employed at an appropriate
level (someone able to identify and effect change within a service)
should then work with the complainant to ascertain the key issues
of concern and the outcome sought by the complainant. The incident
giving rise to the complaint should then be investigated to an
appropriate degree, depending on the issues raised. The investigation
should include those involved in the complaint and draw upon any
relevant technical advice required. A report should then be made
to the complainant and those involved in the complaint. The report
should summarise the complaint, the investigation, its findings,
its conclusions, a clear statement as to whether the complaint
is upheld or not, and recommendations—where appropriate—for
redress and what the service concerned can learn in order to prevent
recurrence.
5. Is information about complaining easy
to find and accessible?
5.2 In our experience, and drawing upon
the feedback we receive, many complaints systems (particularly
in healthcare) are fragmented and difficult to follow. For health
services, there are presently at least seven possible avenues
down which complaints can be routed. Often it is only the most
determined who have their case fully considered. Complaints systems
need to be better aligned and streamlined to focus on achieving
local resolution.
6. Should users be more directly involved
in service delivery? If so, how can this be achieved?
6.1 This depends on the nature of the service
and the circumstances of the individual user of the service. For
the health sector, we are committed to putting patients and, where
appropriate, members of the wider public at the centre of processes
for designing, delivering and regulating services. In our view,
this is the best way not only to ensure that services meet patients'
needs, but also to promote improvements in their experience of
healthcare. "Involvement" can stop at providing information
(which may help users to decide how their needs can best be met)
or at consultation (which may enable them to influence the way
services are designed and delivered).
6.2 Direct involvement in the delivery of
service is more likely to benefit individuals with long term conditions
who can become (or are already) expert in the management of their
own care. The nature of involvement can range from self-care or
direct management of services provided by others, to the transfer
of budgetary control to the user, who then spends it as s/he sees
fit. In any event, the case for direct involvement is strongest
where it is demonstrated that:
— Users want to be involved in delivery
and are able to choose the manner of their involvement.
— It is not unduly burdensome for them.
— It gives them more control over their
lives and over the quality of the services they are involved in
delivering.
— It is likely to improve the quality
of the service and to have a positive impact on their health.
— Disadvantaged and vulnerable individuals
are no less able to benefit. User involvement in delivery does
not widen inequalities in health and well being.
— It renders the service no less cost
effective—where calculations of "cost effectiveness"
take account of the long-term effects on the mental and physical
well being of the individuals concerned.
6.3 Our experience at the Healthcare Commission
has been that direct involvement of users in delivery is more
likely to succeed where the following conditions are met:
— users are fully informed and consulted
in designing the service, and agree the extent of their involvement;
— public service providers (or commissioners
of services) understand the users' needs and circumstances and
what support and professional advice they will need in order to
be involved as agreed;
— there is a clear understanding between
users and providers/commissioners about what the service is intended
to achieve and how it will be monitored and assessed;
— appropriate support and advice is
provided to enable users to be involved in service delivery—with
special attention paid to the needs of disadvantaged and vulnerable
individuals;
— the provider organisation (for example,
a primary care trust or local authority) is able to learn and
change, so that it can effectively manage this kind of arrangement;
— measures are in place to monitor
the arrangement, to assess the impact (such as that on the health
and well being of the individual) and to find out how far it is
meeting agreed objectives; and
— users are fully involved in monitoring
and assessing the service and, where appropriate, improving it.
7. Are there certain types of decision that are
more suited to consultation than others?
7.1 For the Healthcare Commission, consultation
is one method among many for engaging patients and the public
in decisions about health services. The comments that follow are
based on our experience of consulting patients and the public
about aspects of the Commission's own work, and of assessing the
way healthcare organisations engage patients and the public in
their decisions.
7.2 It is important to be clear at the outset
about the meaning of "consultation". Generally, consultation
involves asking people for their views about one or more proposals
for shaping policy and/or practice. Consultees are usually guided
by specific questions relating to different aspects of the proposal/s.
7.3 A consultation may involve an individual,
a specific group or it may be open to the general public. Consultations
can be paper based or web based exercises, where people read the
proposals and answer in writing. They can also be conducted through
meetings to which people are invited individually or in groups,
or through open meetings where anyone can attend. Such meetings
may involve deliberative techniques, where participants are thoroughly
informed, discussions are carefully facilitated, the decision-making
process is transparent and feedback is prompt and thorough, so
that people feel their views are valued, heard and heeded. Alternatively,
a meeting may involve speeches or presentations followed by a
question and answer session, after which few are any the wiser
about what difference their participation has made.
7.4 Whatever form a consultation takes and
whatever decisions it addresses, it should comply with the following
ground rules. These have been drawn up by the Healthcare Commission;
they are consistent with advice on patient and public involvement
issued by the Department of Health and they apply to all forms
of engagement:
— Engage early. If you
are starting to plan a project, you will need to be sure you are
gathering and/or conveying information that is really useful.
Ask who is likely to be affected and who is supposed to benefit
from the work. Start by finding out what matters most to them
and what they need to know.
— Know what you can change.
You must be able to take account of what people tell you.
That means being clear about what decisions you still have to
make, what is negotiable, what you can and can't change, and where
there is a choice between specific options.
— Embed engagement in the work process. Engaging
patients and the public should be integrated into the design of
your project and work plan from start to finish.
— Include all the right people.
Think carefully about who should be engaged in your project.
Is it a particular group of patients or carers? Is it appropriate
to engage members of the wider public? What about black and minority
ethnic groups, disabled people, older people and children? You
may need to make special efforts to reach out to those who are
especially vulnerable to ill-health, but whose voices are seldom
heard.
— Choose your methods to suit your
purpose. There are many different ways you can engage
with patients and the public. Be clear what it is you are trying
to achieve. For example, think about whether you want to carry
out opinion research, or involve people in an informed dialogue.
Then select one or more methods that will enable you to achieve
your purpose.
— Provide clear information.
Make it clear to those you invite to participate what you
are doing and why, including what you can and cannot change in
the light of what they say. Provide them with as much information
as possible to help them participate fully in a dialogue with
you.
— Make sure you have adequate resources.
Make sure you've worked out how much it will cost and where
resources will come from.
— Keep things in proportion.
You will need to consider the scale of the project, as well
as your timescale and budget. Keep your plans for engaging patients
and the public in proportion with these factors.
— Act on what you learn. What
you learn from patients and the public about what matters most
to them and what they want to know should, as far as possible,
inform and change your work.
— Always give feedback. Tell
your participants what you have learned from them and what action
you intend to take in response. If you do not intend to act on
what you have learned, explain why not. Wherever possible, show
what has changed as a result of your actions.
7.5 It follows from these ground rules that
a consultation is likely to be inappropriate where:
— A decision has already been made
and is non-negotiable.
— It is too late for anyone's views
to influence policy or practice.
— It is not clear what decision/s can
be made or to what purpose.
— A decision is highly technical and
requires a depth of knowledge that—with the best will in
the world—cannot be conveyed in terms that will enable people
to offer relevant views.
— Those affected by the decision do
not want to be consulted (for example where someone is very ill
or confused and wants someone else to take responsibility for
their care).
7.6 Decisions that are more suited to consultation
may include those where:
— the parameters and rationale for
decision-making are clear;
— there are clearly differentiated
options and people are invited to choose between them;
— there is time to consult, and there
are adequate resources (in human and financial terms) to consult
effectively;
— the organisation responsible for
the decision is willing and able to heed the views of those it
consults and is willing and able act on those views or to explain
why it cannot do so;
— people want to be consulted, know
why they are being consulted and understand how much influence
they can have; and
— failure to consult is likely to polarise
opinion and generate conflict.
7.7 It is a common misconception that consulting
people will unleash a torrent of demands, or will cause trouble
by encouraging people to articulate views that may be awkward
for the consulting organisation. Our experience suggests that
if an organisation informs and consults people early in the decision-making
process, is clear about what is negotiable and what is not—and
why—and gives clear and honest feedback, it is far less
likely to find itself facing entrenched opposition. If people
are treated as rational human beings, they usually behave that
way.
Do official consultations typically manage to
capture the views of the right people? What kinds of consultation
are most effective in engaging with the appropriate people?
8.1 It is doubtful whether many official
consultations manage to capture the views of all the right people.
Unless special steps are taken, they are unlikely to capture the
views of people in lower income groups, those with lower levels
of education and/or literacy, those whose first language is not
English and those who are in one way or another socially excluded.
These are often the people who are most in need of high quality
public services. Official consultations are unlikely to capture
their views if, for example, they:
— rely on printed or web-based communication,
inviting written responses;
— expect participants to read extensive
consultation documents, or documents that use inaccessible language
and formats;
— use only mainstream media to publicise
consultation events;
— hold events in official surroundings,
and/or in places that cannot easily be reached by public transport;
and
— use only one method of communicating
with consultees.
8.2 The effective engagement of all the
"appropriate people" requires a thorough understanding
of those people and why their views matter, and a customised approach
to communicating with them. In order to engage with the "appropriate
people", a consultation will need to have very clear objectives
and parameters. The consulting organisation must know exactly
whom it needs to consult with and understand what will enable
them to participate effectively. If it is "appropriate"
to engage with those whose voices are least likely to be heard
(sometimes called "hard to reach" or "seldom heard"
groups), the consulting organisation will need to employ a range
of techniques to identify and communicate with them. For example,
the Healthcare Commission has made special arrangements with the
University of Central Lancashire (UCLAN), which has built up an
extensive network of "seldom-heard" groups. UCLAN employs
outreach and capacity building techniques, working through intermediaries
who are familiar with "seldom heard" communities in
different parts of the country. These then convene and facilitate
workshops for members of those communities on their own home ground.
We would be glad to share further information about this work
with the Committee. Conventional approaches to consultation are
unlikely to reach more than a minority of users, and certainly
not those who are most vulnerable and most in need of services.
How valuable are advisory panels in the design
and delivery of public services?
9.1 We have found that advisory panels can
be valuable in the design and delivery of services if they include
people with appropriate expertise, including users of services,
and take steps to ensure that lay members are respected and supported
so that they can participate on equal terms with professionals.
9.2 There is no point having an advisory
panel, however, if the organisation is unable or unwilling to
act on its advice. A recurring theme in all our work in the field
of patient and public engagement is the need to build the capacity
of public sector organisations to communicate effectively with
their users of services and respond to their views and needs.
Putting people first in the design and delivery of public services
means changing the culture and practice of public service organisations.
26
How does user influence relate to wider issues
of democratic accountability?
10.1 The Healthcare Commission is committed
to involving patients and the public in decisions about health
services. "Patients" are current users of services,
who have an immediate and personal interest in how services are
delivered. "The public" are those who are not current
users of services. They have a broader and longer term interest
in how services are designed and delivered because they may need
them in future, relatives may be using them and/or because they
are affected indirectly by the impact of services on others. The
interests of current users of services and the wider public do
not always coincide but both need to be taken into account. Public
service organisations need to understand these different interests
and find ways of accommodating them.
10.2 Public services should be accountable
not only to people who use them but also to the wider community,
for reasons outlined above. We welcome the development of health
overview and scrutiny committees because they introduce an element
of local democratic accountability. However, elected representatives
cannot speak for all sections of the communities they serve, unless
they make special efforts to understand the diversity of groups
and interests within them, to reach out to all of them (especially
those whose voices are "seldom heard") and to elicit
and heed their views.
10.3 In our experience, public service organisations
that are committed to "putting people first" need to
generate and integrate three strands of influence: that of users
of services, that of the wider public including disadvantaged
and seldom-heard groups, and that of democratically elected representatives
(national and local).
January 2007
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