Improving the quality of health care
Methods for incorporating patients' views in health care
This is the third of three articles on research into improving the
quality of health care
Michel Wensing, senior researchera, Glyn Elwyn,
professorb.
a Centre for Quality of Care Research, University Medical Centre
St Radboud, PO Box 9101, 6500 HB Nijmegen, Netherlands, b Primary
Care Research Group, University of Wales Swansea Clinical School, Swansea SA2
8PP
Efforts to improve health care will be wasted unless they reflect what
patients want from the service. But to be sure thatsurveys of
patients' views are valid and have an effect on care,the methods
used must be evaluated rigorously
Society now acknowledges the importance of the views of users in developing
services, and the healthcare sector has used arange of methods to
identify the views of patients and the public.Examples are
questionnaires to assess patients' needs before aconsultation with
the clinician, shared decision making, focusgroups with patients to
include their views in clinical guidelines,and surveys among
patients to provide feedback to care providersor the public. Such
methods need to be examined in terms of validity,effectiveness, and
implementation.1 We describe some of the
important issues related to measuring patients' views and evaluating
their use in improving health care.
Summary points
Patients can contribute to debates on health care by giving
their preferences for care, evaluations of what occurred, or
factual reports of care
Measures of patients' views should be assessed for
validity, preferably by rigorous qualitative studies
Methods to include patients' views must be shown to affect
the processes and outcomes of health care; possible negative
consequences should also be considered
Types of measures
The methods used to determine patients' views can be divided into three
types: measures of preferences, evaluations by users,and reports of
health care (box). The types of measure used willdepend on what
aspect of health care is being assessed, but allhave
limitations.
Preferences
One problem with assessing preferences isthat patients' decisions
about what is important in health careoften reflect their individual
experience rather than a generalview. Interaction between patients
in focus groups can help overcomethis.
Another issue with measures of preference is deciding what options are
presented. Qualitative research methods, such as individual
interviews and focus groups, use open ended approaches such astopic
lists rather than structured questionnaires. These givethe greatest
scope for expressing different preferences. Quantitativemethods for
eliciting preferences include surveys and consensusmethods, such as
Delphi and nominal group techniques. These techniquesask individuals
to rate, rank, or vote for different types ofcare (such as, general
practice or hospital) or attributes ofcare providers (short waiting
list, adequate information). Itis unclear whether the different
methods of rating produce comparableresults. 67
Definitions of
preferences, evaluations, and reports
Preferences are ideas about what should occur in
healthcare systems.2 Preference is
often used to refer to individual patients' views about their
clinical treatment, and the term priorities is used to describe the
preferences of a population3
Evaluations are patients reactions to their experience of
health carefor example, whether the process or outcome of
their care was good or bad4
Reports represent objective observations of organisation
or process of care by patients, regardless of their preferences or
evaluations.5 Patients can, for
instance, register how long they had to wait in the waiting room,
irrespective of whether this was too long
Several models have been developed to collect and analyse preference data,
including the expectancy-value model, multi-attributeutility models,
and conjoint analysis models (discrete choiceexperiments).
89 The choice of
methods will influence theresults.3
Patients should contribute to the development ofpreferenceframeworks.
Decisions on prioritisation in healthcare systems inevitably involve a wide
array of factors, and instruments have to be ableto incorporate this
multidimensionality. The most realistic methodspresent constrained
choices, in which trade-offs have to be madebetween different
attributes orchoices.
Evaluations
Questionnaires that ask for evaluations ofhealth care in terms of
satisfaction or dissatisfaction show lessdiscrimination than
questionnaires that use terms such as goodand bad or agree and
disagree with concrete aspects of care.10Some questionnaires measure preferences and experiences and deriveevaluations from the two by calculating difference or ratio scores.11There is some evidence that patients
distinguish between preferencesand experiences,12
but there is no validated framework for derivingevaluations from
preferences and experiences.13
Patients are not always satisfied with their experiences of health care,14 and qualitative methods can be used to examinetheir experiences in more depth. Qualitative approaches are particularlyuseful for exploring patients' views in areas that have not beenpreviously studied.15 Pragmatic approaches
to qualitative analysis,such as logging key themes without full
transcription analyses,have been used, but the reliability and
validity of such approacheshas not beenassessed.
Reports
Although reports reflect patients' observations,they do not
necessarily imply a patients' perspective on the qualityof care. In
some situations, patients' reports are the most accuratemethod of
observationfor example, if data are required abouta patient's
pathway through different healthcareinstitutions.
Quality of measurement instruments
Assessments of patients' views cannot be considered representative unless the
measure has been properly evaluated. Variousaspects need to be
considered.
(Credit: SUE SHARPLES)
Validity
In a review of patient satisfaction studies,only 46% reported some
validity or reliability data.16 Ideally,the instrument used should be compared with a criterion measurethatis, a measure with established validity. For instance, patients'reports of their care can be compared with the medical records
or clinicians' reports of the care delivered.15
Criterion measures are often not available, however, so other approaches are
needed. In this case, the validity of instrumentsshould be based on
a conceptual framework that describes a specificdomain (the relevant
aspects of health care). Ideally, patientsshould be consulted about
the selection and description of theincluded aspects. Qualitative
studies are particularly suitablefor this purpose. Europep, an
international instrument for obtainingpatients' evaluations of
general practice care, was based on systematicliterature studies and
qualitative and quantitative studies ofpatients' priorities.17 Sometimes it is also possible to verify
that patients' views are associated with other factors as predicted
by theory. This is known as constructvalidity.
Psychometrics
Quantitative instruments should have adequatepsychometric features.18 High response rates to an item usually
indicate that the question is relevant and understandable. However,
this does not apply to instruments that examine rare events, suchas
medical errors (complaint procedures) or side effects of drugs
(surveys among people taking thedrug).
Instruments designed to measure aspects of quality should also show good
variation across patients (discrimination) and variationbetween
measurements at different points in time (responsiveness).If several
indicators are supposed to assess one dimension ofcare, validity is
supported by high internal consistency in theresponses to indicators
in that dimension. Ideally, instrumentswill also have good
test-retestreliability.
The most often used reliability coefficients (such as ) refer to the internal
consistency of items within a dimension perpatient. In the context
of quality improvement, however, aggregatedscores per care provider
are often important. These figures arebased on several indicators
and a number of patients or events.Generalisability analyses can be
used to calculate reliabilitycoefficients for the aggregated scores.19
Sampling
Non-responders are more likely to be ill,less satisfied with care
provided, and less frequent users ofhealth care than responders,
although this isn't always the case. 2021 Surveys or interview methods need to consider
the effects of suchpatients being excluded or dropping out. Response
rates for surveysof patients vary considerably. A literature review
reported amean response rate of 60% and a standard deviation of 21%.22Many factors can influence the response
rate of a survey. Theseinclude:
Motivation of the clinician to recruit patients
Attractiveness of the layout of a questionnaire
Method of administering the questionnaire to patients
Use of monetary incentives
Use of information technology for administering questionnaires.23
Effectiveness
Methods to identify and use patient views to improve health care need to be
shown to be effective. The best way to show thisis by randomised
trials. It is important that the outcomes chosenare relevant. We
suggest that outcome measures for the evaluationare derived from the
underlying objectives of the quality improvementexercise.
Ethical and legal perspectiveIt is an ethical and legal rule
that patientsshould be informed and involved in their health care,
at leastto minimal standards. Many patients wish to take part in the
decisionprocesses.24 When the aim is
to include patients in decisionmaking, it is the process of
involvement rather than its outcomethat is crucial. The criteria of
effectiveness are therefore definedby the ethical principles and
patients' preferences. For instance,shared decision making can be
evaluated in terms of informationdelivered on treatment options,
checking of understanding andpreferences, and making a shared
decision.25
Quality of carePatient involvement can also result in betterprocesses and outcomes of care. It could, for instance, make cliniciansmore responsive to patients' preferences, contribute to better
implementation of clinical guidelines, improve safety by engaging
patients in redesigning processes, and result in better satisfaction
with care. Patients can be seen as co-producers of health care,
because their decisions and behaviour influence healthcare provision
and its outcomes. Outcome measures should reflect the effectson
process or outcomes of care that areexpected.
Strategic perspectiveIntegration of patients' views may be drivenby political and strategic motivations, such as protecting a company'sa position in a competitive healthcare market, the wish to have
democratic control in the healthcare organisation, or the perceived
need to do something for underserved populations. Such aims canbe
difficult to assess, but measurable outcome measures can befound in
some cases. For instance, position in the healthcaremarket can be
evaluated in terms of attendance rates and turnoverof
patients.
Finally, evaluations should consider possible unintended consequences. These
include unrealistic patient expectations of whathealth care can
deliver; defensive behaviour of care providers,resulting in higher
numbers of unnecessary clinical procedures;undermining of
professional moral; and increased costs. Such consequencesare not
imaginary. Conflict between public health policy and therights of
individuals to exercise choice are examples of irresolvabledilemmas.
One recent example is the refusal of parents to havetheir children
immunised with the MMRvaccine.
Implementation
As well as studying the effects of specific methods, it is important to know
whether they are actually used in health care.Clinicians, patients,
and the public may lack the skills to usespecific instruments or
have negative attitudes about specificapproaches. Incentives built
into employment frameworks can leadto important shifts in attitudes for
example, the new generalpractice contract in the United Kingdom
mentions the evaluationof "patient experience" as one of three areas
for measuring quality.26Such
strategies should be evaluated in terms of uptake of theinstruments.
Conclusions
Increased participation of patients and the public in health care is
desirable. Considering patients' views can improve processesand
outcomes as well as satisfaction. However, many of the methodsused
have not been shown to be valid or effective. The evaluationof
specific methods to obtain the views of patients thereforerequires
urgentaction.
Acknowledgments
This is a shortened version of a paper previously published in Quality and
Safety in Health Care 2002;11:153-7.
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