role ofhealth in achieving quality servicequalitysafety.bmj.com/content/qhc/3/4/203.full.pdf ·...

Quality in Health Care 1994;3:203-209

Role of users of health care in achieving a qualityservice

Anthony Hopkins, John Gabbay, Julia Neuberger

The modern practice of medicine recognisesthat patients are not merely passive recipientsof advice and procedures from healthprofessionals but that they have an active rolein their own care. For there to be a fullassessment of the quality of care, contributionsare needed from at least three parties: thedoctor, other health professionals, and thepatient. Sometimes there will be otherinterested parties - for example, parents in thecase of young children and carers in the caseofthose who are helping to support people withchronic mental or physical illness. Potentialpatients are also interested in the quality oftheir local services. In this paper the term"user" is taken to include not only present andpast patients but also potential users of healthservices - that is, the general public. Theinterests of each of these three groups is notnecessarily always the same.The purpose of this paper is to analyse the

contribution that users can make to clinicalaudit, extending the observations made byDonabedian in 1992 in his Lichfield lecture.'In this he assigned three principal roles to usersof care, as follows.* As definers of quality, evaluating quality,

and providing information that allows othersto evaluate quality

* As targets of quality assurance, by which hereferred to their role as partners or "co-producers" of care

* As reformers of care, emphasising their rolein improving healthcare systems.Since that lecture there have been other

contributions.2 3 We extend the discussion ofhow users, through involvement in clinicalaudit, may improve health services. Our reviewfollows Donabedian's earlier framework ofstructure, process, and outcome.4 We alsoconsider users' involvement in determiningaccess to the process of care.

Users' determination of structure ofmedical careELECTED GOVERNMENTEven in democracies in which healthcare usersas voters can elect their government on aregular basis, there is usually little opportunityto use this as a mechanism for affecting thebasic system of health care. Single partypolitical mandates are too blunt to reflect themultiplicity of public views on health services,5and even in multi-party states a new party ingovernment is unlikely to make radical changesto the healthcare system. Furthermore, govern-ments can be elected on the promises of healthreform - for example, the Clinton adminis-

tration in the United States - without it beingclear what the reforms are likely to be.

LOCAL HEALTH SERVICES

Users of health services should be able to havea major say in how their local health servicesare delivered. District health authorities andfamily health services authorities in the UnitedKingdom have a responsibility to define thehealth needs of their local populations and tocommission or purchase health services tomeet those needs. The structure suggests thatthe purchasers should represent the users'interests, but it is difficult to see how they cando so without much closer links into thecommunities on whose behalf they arepurchasing care. Indeed, there is increasingconcern that the appointment of politicalnominees to health authorities and to chairNHS trusts makes those health authorities andtrusts less accountable to users than anyelectoral system. Kaletsky wrote: "The logic ofconsumer sovereignty points to direct electionsfor local health authorities, school governors,police chiefs, and even public utility regulators.Such detailed accountability may seemunimaginable in our elective dictatorships, butis common in America and many othergenuinely democractic countries.5"The introduction of community health

councils in the United Kingdom in 1974recognised the need for more user participationin the old style NHS. Statute requires thatthese councils be consulted about various localdecisions such as the closure of a hospital.Some councils have been successful in pressingfor the development of local services or for thealteration in emphasis in the delivery of localservices. However, there has been concern thatdespite all attempts some community healthcouncils are not representative of their localpopulations. The Minister of Health in theUnited Kingdom stated that he wantedcommunity health councils to work out "newand more effective relationships" with localpurchasers,6 but it remains unclear how this isto be done.7 The Patients Association in theUnited Kingdom has identified a need fortraining for lay participation in health and hassuggested ways of empowering lay people toalter the structure of their local health services.8The publication of Local Voices9 underlines theneed to involve local people in purchasingactivities. An additional concern is thatidentifying and meeting health needs may bedetermined by health professionals rather thanby users of health services. This may accountfor the emphasis, until very recently, on acute

Research Unit, RoyalCollege ofPhysicians,London NW1 4LEAnthony Hopkins,directorWessex Institute ofPublic HealthMedicine, UniversityofSouthampton,Southampton GeneralHospital,Southampton S09 4XYJohn Gabbay, professorCamden and IslingtonCommunity HealthServices NHS Trust,National TemperanceHospital,London NW1 2LTJulia Neuberger,chairpersonCorrespondence to:Dr A Hopkins,Research Unit, RoyalCollege of Physicians,11 St Andrew's Place,Regents Park,London NW1 4LEAccepted for publication15 November 1994

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Hopkins, Gabbay, Neuberger

hospital care rather than on care in thecommunity.

Local priorities for health servicesCommunity health councils are in somethingof a dilemma. Should they attempt to representthe public's views when health authorities areconsidering local priorities and risk legitimisingdecisions to leave some needs unmet? Thealternative is not to participate in "rationing,"thereby forgoing the chance to influence localservices and perhaps calling into question thevery need for their existence.' " It seems to usthat involving the public in setting priorities,which is, in effect, setting the structure of thehealth service they wish to see, requires greaterintellectual development and research thanthese issues have so far been afforded. Themethodological issues have been barelytouched, and we note Ham's comment thatpublic choice is influenced by "the way inwhich questions are framed."' We are

concerned that there should be research anddiscussion into better ways of maintainingdemocratic choice in an important componentof our social system. The debate should be a

continuous one. Possibilities include openmeetings, telephone interviews, door to doorsurveys, and small groups invited to "focus" on

one particular tranche of issues before widerdebate. All this may help build an ethicalconsensus, when choices are often so painful.

Perhaps the best known example of howusers of health services have been asked to tryand influence the local structure of theirservices is the Oregon experiment. As this hasbeen so extensively written about in recentyears, (see reference 13) we do not discuss itsmethods further, beyond noting that attemptswere made to involve the local population indecisions about setting standards for what thestate health system would fund in future. Thecomplexities of the project are indicated notonly by concerns that the local meetings maynot have been truly representative of thepopulation but also by the necessary interven-tion by legislators and health professionals torationalise the final rankings of what shouldand should not be funded.Ham reviewed attempts by six district health

authorities in the United Kingdom to set localpriorities for health care and the degree towhich the local population was involved in thediscussions.' We agree with what he writes:"Inevitably the process of setting prioritiesinvolves making judgements on the basis ofincomplete information and evidence. Thesejudgements are likely to be more soundly basedand defensible if they have been exposed topublic discussion." To his "incomplete infor-mation and evidence" we would add, "a lack ofethical consensus," illustrated by the exampleof coronary bypass surgery. The geographicalvariations in numbers of elderly people havingsuch surgery suggests that different groupingsof general practitioners, cardiologists, andcardiac surgeons view differently the "value" ofthis procedure. There is little doubt of theeffectiveness of this treatment for older peoplein appropriate cases.'4

INDIVIDUAL MEMBERS OF "PRESSURE GROUPS"Some physicians suggest that the representa-tiveness of members of patient groups pressingfor better services is in question. The researchevidence, reviewed by Williamson, suggeststhat this is not so and such individuals dogenerally reflect the aspirations of what may betermed the "general members" of theirgroups. 5

Users' views on access to careUsers of health services need to have infor-mation about the benefits of concentration ofservices. They need to know how much betterit is, in terms of outcome, to travel nearly 1 15km for radiotherapy at a tertiary centre ratherthan have less high technology care at a familiarhospital close to home.'6 This example illus-trates how a clearer definition of the rights ofusers of health services is needed in relation tocontracts made by the health authority in thearea in which users reside. Are the wishes of thelocal population taken sufficiently into accountwhen deciding that a procedure should beundertaken in a tertiary care centre in a districtfar removed from the local users' place ofresidence? The example also highlights thedearth of methods to assess the relative valuesof access and other aspects of the quality ofcare.

Users and process of careDETERMINING EFFECTIVENESS OF CARE

Patients are naturally concerned that thetreatments they receive should work. Theefficacy of healthcare technologies is deter-mined by randomised controlled trials. By theirwilling participation in such trials, users ofhealth services have the primary role indetermining the efficacy of treatments forfuture generations of patients. Recruitingpatients to randomised controlled trials is noteasy, not least because ethically the researchphysicians or surgeons have to be confidentthat at the time of randomization there is noknown benefit over and above the "control"intervention. If firm evidence of benefit alreadyexists then, clearly, withholding the treatmentfrom all patients would be unethical. Yet theremust be some prior evidence of benefit, or thetrial would not be instituted in the first place.Giving more information to patients beforerandomisation has led to a reduced rate ofrecruitment to many trials. Particular concernhas been voiced about the growing section ofthe population with Alzheimer's disease andother degenerative disorders. Research isessential to improve care for his condition andto slow deterioration, but those with thedisease are unlikely to be competent to givetheir consent to being entered into trials.'7These and other ethical and practical consider-ations have led to a suggestion that peopleshould "sign on," as it were, for randomisedcontrolled trials in certain major diseases at atime when they are free from symptoms.

DETERMINING TECHNICAL COMPETENCEIt is difficult for users of health services to becompetent in judging the quality of the more

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Role of users of health care in achieving quality through clinical audit

technical aspects of medical care. To take anextreme example, they are unlikely to have aninformed view about the different types ofanastomosis that could be performed in arterialor bowel surgery. However, even in suchtechnical cases, there will often be occasions inwhich users need information on which to basetheir choice.

Research evidence indicates that patients arereasonably well informed about what techni-cally should be done in a consultation. Forexample, Davies and Ware video recordedsimulated consultations that deliberatelymanipulated three different aspects of care(technical aspects, psychosocial aspects, andpatient participation) for a repeat outpatientconsultation for a "patient" with previouslydiagnosed angina.'8 The quality of the techni-cal aspects of care was rated by physicians and,separately, by lay people. The lay people ratedsignificantly more favourably those interviewswhich were scripted to include necessary andsufficient history and items of physicalexamination than low technical qualityconsultations which omitted relevant andincluded irrelevant items. These results wereobtained in the United States. In a lessinformed constituency people may be less ableto rate the technical aspects of care.

In another study patients with tensionheadaches interviewed before their consul-tations with a neurologist had vague and illformed ideas of what to expect. However, oncein the consultation their expectations seemedto crystallise, and some patients were able tosay why they were dissatisfied with sometechnical aspects of care - namely, what theneurologist did, such as the extent of thephysical examination. However, many morepatients were dissatisfied with communicationand other interpersonal aspects.'9 20

CONFUSING QUANTITY OF CARE WITH QUALITY

OF CARE

There is evidence that at least some patientsequate technical quality with quantity of care.Davies and Ware suggest that the proponentsof this argument hold that consumers can be"seduced by the kind or number of tests andprocedures received into believing that servicesprovided were appropriate and well in-formed."'8 Sox and his colleagues studied menwith chest pain of a type considered on thebasis of a clinical algorithm not to require teststo rule out a myocardial infarction. However,patients who were randomly assigned to haveelectrocardiography and measurement of theirserum concentrations of creatine phospho-kinase (which is raised if myocardial infarctionhad occurred) evaluated their overall care morefavourably than did those who did not.2' Again,however, such observations are not generalis-able to all clinical situations. The study ontension headaches found no significant relationbetween patient satisfaction and the extent ofinvestigations performed.'9 20 We do not knowhow stable such observations are. That studywas carried out in the early days of brainscanning, and the same results may not befound if it were repeated.

WHAT PEOPLE WANT: USERS' CHOICE OF

INTERVENTION

We argue that the nearer to "normality" is the"medical" event experienced by a person, thenthe greater should be the input of the users ofhealth services to determine the types of helpprovided. For example, users of maternalhealth services have been the dominant forcein changing the practices of obstetric care inthe past 20 years, so that expectant mothers arenow offered a wide choice of birthing practices.Childbirth is an event experienced by mostwomen; likewise, most of us grow old andrequire some sort of help in extreme old age.Users of health services should also be thearbiters of whether help, care, or support insuch circumstances reaches acceptablestandards. By this thesis, users should be thearbiters of good practice in a significant part ofmaternal care, in the care of elderly people, inthe care of young children, and in healthpromotion and programmes designed toprevent illness.On the other hand, a tension exists between

what people want and the evidence for theclinical effectiveness of that want. An examplemight be language therapy after stroke, forwhich there is little evidence of effectivenessover and above support provided by volun-teers.22 Another example is that of a patientwith a tension headache requesting a brainscan from a neurologist, although the evidencesuggests that scans are not an appropriateinvestigation in these circumstances.23Physicians are placed in the front line inattempting to resolve the dilemma betweenacquiescing to what the patient wants (whichmay carry some significant clinical risk) andproviding services of proven effectiveness. Thisissue is insufficiently considered in the presentinternational "effectiveness initiatives."

Users' views on outcomes of careFailure to recognise the different perspectivesof health professionals and patients may leadto dissatisfaction unless health professionalstake care to explain the reasons for trying toachieve the outcome they consider to beimportant. For example, after a minor strokea patient's hand may well remain clumsy - apoor outcome. Neurologists know that nointervention is likely to alter that particularoutcome, and their perspective is (if relevant)to succeed in helping the patient to stopsmoking and to reduce high blood pressure.These are the best outcomes neurologistsknow that they can realistically achieve, eventhough they are not on the patient's agenda toany great extent. However, the patient'semphasis will probably be on physiotherapy,primarily in an attempt to improve the functionof the hand. Technical motor function isimproved only to a limited extent byphysiotherapy.24 On the other hand, patientsdo gain from physiotherapy an increased senseof wellbeing and sense of self worth, equallyvalid outcomes that must be taken intoaccount.25

Users of health services also have a role inalerting health professionals to the fact that

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care which seems efficacious from a technicalmedical perspective may be ineffective fromtheir perspective. One example might be theuse of drugs to treat high blood pressure. Manydrugs are efficacious in lowering bloodpressure, but at the expense of unpleasanteffects such as impotence and lethargy whichmake them less effective in everyday clinicalpractice,26 reflecting the wider point that thepatient's and physician's perspective about theoutcome for which each is striving may bedifferent. The differences between consumerand professional standards in health care areexplored by Williamson in her appropriatelytitled book, Whose Standards?. 15These disjunctions spill over into research.

Randomised trials of interventions shouldinclude as end points outcomes that areimportant to patients, such as reducingshortness of breath during daily activity,avoiding being admitted to hospital for heartfailure, or decreasing the risk of a heart attack.At present, some researchers use only technicaloutcome measures in trials, such as changes inlung function, measures of cardiac output, anda reduction in serum cholesterol concen-tration. Good examples of research intooutcomes centred on the user perspective arethat by Garratt and colleagues on theimportant outcomes for patients afteroperations on their varicose veins27 and thevalue of physiotherapy to stroke patients.25

Users' involvement in auditUSER GROUPS

Community health councils in the UnitedKingdom have been slow to ask their localproviders to audit different aspects of care.28However, commissioners of local care are nowadvised to retain 40/o of the audit budget foractivities which will presumably reflect theirconcerns - a proxy for the concerns of localusers.29

INDIVIDUAL USERS

Audit studies have already been published inwhich patient involvement has been suggestedor tried. Devlin discussed the importance ofpatients' perceptions for surgical audit,30 a viewechoed in the work of Richardson and otherswho showed how perceptions of a hospital staydiffered between the hospital doctors, nursingstaff, family doctors and patients.3' In mentalhealth Sharma also found an appreciable dif-ference between those aspects of care ratedmost useful by patients and by nurses at apsychiatric hospital.32 Other studies in mentalhealth are reviewed by Rogers and colleagues.33In general practice Rashid and colleaguesfound significant disagreement betweenpatients and their general practitioners aboutthe doctors' ability to put patients at ease, tooffer explanations and advice on treatment,and to allow expression of emotional feelings.34Hares and colleagues showed how patients andhealth professionals rated differently aspects ofdiabetes care,35 and Taylor and colleaguesexplored patients' knowledge of their anti-coagulant treatment and how this affectscontrol.36

Users of health services must also be the pre-eminent arbiters of good quality practice insome areas in which they, and only they, candetermine good practice, as illustrated in thefollowing examples.

ReliefofpainPain is a subjective experience, so patientsmust be the judge of whether their pain hasbeen effectively relieved. Postoperative painstill seems to be inadequately managed onoccasion. Research studies show that patient-directed management of postoperative pain ismore effective than if nurses control dosageand intervals. In palliative care, too, patientsshould, as far as possible, control their ownpain relief. Adequate relief of pain is a usefultopic for clinical audit by a surgical orgynaecological firm or in palliative care, and asuggested protocol is available.37

CourtesyIf users of a health service think that they arenot being treated courteously then no one cansay that their perceptions are incorrect.

CommunicationIf patients fail to understand the nature of theirillnesses and of the treatment planned, then thedoctor or other health professional is likely tohave failed to explain these matters incomprehensible terms.38 We argue also thatconsumers generally are the best judges ofwhether or not literature aimed at promotinghealth or at attracting people to servicesdesigned to prevent illness fulfil their purposes.Even at the simple level of package inserts fordrugs in the United Kingdom, themanufacturers' information is often lamen-tably poor from the consumers' perspective.Switzerland and Sweden, two countries withvery different political and cultural traditions,have shown that it is possible to get importantinformation about drugs across in a userfriendly way. In addition, in multiracialsocieties information must be made available inseveral languages, and at consultations anadequate interpreter should be present39certainly a point for audit.

Personal circumstances and choiceIndividual users need to alert their doctor orother health professional to important aspectsof their own life which require consideration,and health professionals must be sensitive tothese aspects of care. For example, there isgood evidence that antiepileptic drugs after afirst epileptic seizure prevent subsequentseizures.40 An epileptic schoolteacher, con-cerned that she may have a seizure in front ofher class, might therefore wish to take suchdrugs. On the other hand, it would also be rightfor her doctor to tell her of the potential slightbut definite effects of antiepileptic drugs oncognitive function, their potential teratogeneticeffects, and the troublesome interaction ofsome antiepileptic drugs with oral contra-ceptives. The patient could then make aninformed decision about whether to take thedrugs or not. Users of health services are at

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present particularly concerned that the varioustreatment options for a condition are notappropriately displayed for their choice, withadequate information provided about thepossible favourable and unfavourable out-comes of each choice.

"Hotel" standardsUsers of health services are aware that hospitalsare not luxury hotels, but, within resourcesavailable for health care, they are the arbitersin determining whether the cleanliness of award, the attractiveness of presentation offood, and many of the facilities within a wardare of an acceptable standard. Work inBloomsbury showed the simplicity of collectingthe views of patients about such aspects ofcare.4' However, many researchers believe thatfar more sophisticated methods are necessaryto capture patients' feelings about clinicalaspects of their care.

Continuity and coordinated careContinuity and coordinated care, valued highlyby users of health services,42 are likely to beincreasingly threatened in hospitals since thenumbers of hours worked by younger doctorshas been reduced. Of necessity, this means thatany hospital patient will encounter a largernumber of junior medical staff. This changefollows similar changes in the pattern of theorganisation of nursing that occurred about 15years ago, in response to which the nursingprofession attempted to counter the perceptionof discontinuity by requiring that each patientbe assigned a primary nurse.Much patient dissatisfaction centres on the

lack of coordination in care, so that, forexample, a physiotherapy session may bescheduled at the same time as a consultantround, denying an opportunity for the patientto speak to the consultant. Perhaps even moreimportant is the fragmentation of servicesacross institutional boundaries. Patients areinterested in their illness and its outcome, notin the institutional and administrative details ofits management, which should occur almostinvisibly behind their various contacts withhealth professionals. Increasing professionaldemarcations and the resulting fragmentationof care has resulted in the emergence of a newprofession - the care manager - whose job isto integrate the care provided by differentprofessional factions. The emergence of suchposts is an indictment of interprofessionalcommunication and of the present organis-ation of care.

Professional accountabilityIn the previous sections we have explored howto involve users more in clinical audit. In orderto achieve change we have to consider howhealth professionals can be made moreaccountable to users of health care. Withoutsuch accountability, the involvement of usersin audit will have little impact. Culturalchanges in the developed world in the past 15years have been associated with increaseddemands for professional accountability. Thishas not only affected the practice of medicine:

there is wide discussion about the account-ability of schoolteachers for the education oftheir pupils, and demands for increasedopenness in the legal profession. This has beenreflected in the growth of pressure groups ofconsumers such as, in the United Kingdom,the Consumers' Association and the PatientsAssociation. A recognition of the rights of usersof centrally controlled services had led to thegrowth of the idea of the participative citizen,and the citizen's charter. Work by Wennbergand his colleagues in the United States43 andby McPherson, Coulter, and others in theUnited Kingdom44 have shown the extent ofpractice variations, which cannot be explainedby variations in the type of patients treated andthe severity of their disease. Users recognisethat the very existence of such variationundermines the concept that doctors know theright and proper way to treat every disorder.New systems of accountability are underdevelopment. The entire NHS complaintssystem has recently been reviewed andsimplified and more sensitive way of handlingcomplaints proposed.45 The General MedicalCouncil is considering new procedures fordoctors whose clinical performance falls shortof a reasonable professional standard.46Perhaps more important is the recognition bythe royal colleges that more formal systems ofcontinuing medical education are likely toimprove care.47 User groups are exerting somepressure for re-accreditation as a method ofensuring that health professionals remain up todate.

The way forwardWe believe that users must be involved farmore in discussions about health care, byhelping choose measurable outcomes of carethat are relevant to them, by participating inresearch studies, by commenting on researchfindings, and by discussing the allocation ofresources to particular types of health care.Much of this will be unfamiliar to many usersof health services, although those with chronicconditions have, in recent years, participatedmuch more in their personal care plans,particularly those in the community. Patientswho have been in a multidisciplinary environ-ment, such as a hospice or in some dayhospitals, will also have more experience ofbeing involved in their own care. But thatpersonal involvement is different from beingpart of a consultation group. Better methods ofencouraging users to take part still need to bedevised.We need to explore ways of communicating

information about illness, about availabletreatments, and about the probabilities ofdifferent outcomes in a manner which isfriendly, informative, and non-directive and ina way which allows the patient to make asensible choice of treatment. More research isneeded of the effectiveness of differentmethods of communication to diverse groupsof patients, which may include more innovativeuse of pictorial information and videorecordings. Wennberg's group in the UnitedStates and others in the United Kingdom are

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exploring how patient choices are influencedby interactive video disks, in which patients canexplore how previous patients have felt aboutrelief of symptoms, the discomforts of theoperation, and the occurrence of unwantedeffects.48The Patients Association informs us that

healthcare professionals still determinetreatment without adequate consultation withpatients. For example, women with primarybreast cancer with no nodal involvement arenot always a choice between local excision ofthe tumour and mastectomy, which outcomesevidence would suggest would be appropriate.There is also widespread variation in practicewhether or not axillary nodes are removed forstaging purposes,49 50 as recommended inguidelines published in 1986.5' Clinicalpractice is slow to change in response toresearch findings,52 and more research isneeded on how best to influence professionalactions. Many think that an attitudinal changeis also necessary so that doctors are moreresponsive to the views of users of healthservices and of individual patients.For true patient choice to be commonplace,

there needs to be a concerted compaign oninformation and education, to alert patients tothe fact that several options for treatment existin many clinical disorders. In areas such asHIV/AIDS and breast cancer, patient groupstend to be relatively well informed. This is notso true, however, for many disorders. Forpatients with non-small cell carcinoma of thelung, for example, options vary between radio-therapy, chemotherapy, and surgery, or acombination of these. Indeed, the generalpractitioner's choice of consultant for firstreferral probably plays a large part indetermining the treatment offered.

Users need to be involved in focus groups forsingle diseases or groups of conditions,working with clinicians in spelling out whatmatters and what does not, what is helpful andwhat is not. Several examples already exist inthe United Kingdom. Patient participationgroups meet in general practitioners' surgeries,and the research unit of the Royal College ofPhysicians has involved patient groups whendetermining guidelines for good practice forseveral clinical disorders (see reference 53).However, this is not the same as having groupsof interested users in the majority anddetermining the issues they perceive to be ofgreatest importance. Such groups, if multipliedaround the country, could play a major part indetermining patient focused guidelines andalso help monitor their use and their effect onpatient care. Samples of users could be askedin telephone interviews about the kinds ofservices they would like to see and how theyhave felt about those that they haveexperienced. Such interviews would need to bedesigned by polling professionals alongsideusers, as would any written questionnaires.

Systematic work also needs to be done byprofessionals alongside focus groups onservices such as physiotherapy, for which thereis great demand from both patients and generalpractitioners. Perhaps healthcare scientists

have adopted inappropriate models ofefficacy.25We also need to explore new ways of

educating the public about the effectivenessand cost effectiveness of different proceduresor treatments. We need to consider ways ofhelping users to appreciate their responsi-bilities as well as their rights. They need to behelped to take responsibility not only forhelping to determine their own care but also forweighing up the effect that their decision willhave on other members of society who mayforgo treatment as a remote effect of thatdecision. Beyond personal choice, importantthough that is, is the public interest, anddeciding priorities on behalf of a population.The most important role for users may be inpublic meetings called by purchasers to decideabout resource allocation. Community healthcouncils are central to this, and they need toset the agenda of debate. But other local figuresmay also have a role, such as local councillors,school governors, clergy, parish councilmembers in rural areas, and those who work inhealth centres but are not necessarily health-care professionals. We would add to such openconsultation the possible benefit of directelection to purchasing authorities and boardsof trusts to give them clear public account-ability.

Hospitals, too, have a duty to their localusers. Community health councils shouldsuggest to trusts those services that they wouldparticularly like to see audited. The councilsthemselves should be involved in the auditprocess, contributing knowledge that only theycan have. It is not usually difficult toanonymise records sufficiently to make itacceptable for the councils to participate in theaudit process and discuss issues that reflect theparticular concerns of local users. Suchproposals tend to be feared by healthprofessionals, who fail to recognise that muchof what they do can be assessed only by usersor patients rather than by other healthcareprofessionals. A key element of an accountableservice is to allow users into the decisionmaking and audit processes.

Users of health services need to understandthat not all current interventions are effectiveand that only through more research will wediscover what works and what does not. It istherefore essential that users of health servicesare included in the audit process and partici-pate in measuring outcomes of interventions.Users must be seen as partners in research andnot as subjects. The results of any trial shouldinclude the impressions of the subjects, andthey should be informed of the results. Usersshould also be consulted about future researchprotocols.

ConclusionThere is no lack of ways of including users farmore in clinical decision making. The difficultyis in finding the courage to change the mould,to trust the users, to realise they haveperceptions that no one else can have, and thatthey want to play a part. It should be possibleto share information, discuss difficult issues,

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debate allocation of resources, and writepractice guidelines which reflect the views ofpatients and their families. That way lies abetter health service.

The Research Unit of the Royal College of Physicians issupported by generous grants from the Wolfson and WeltonFoundations, the Help Medicine Appeal, other charitabledonations, and the NHS Executive.

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