‘‘Public’ versus ‘Patient’ Public’ versus ‘Patient’ RepresentationRepresentation

Rosemary ChessonRosemary Chesson

Health Services Research GroupHealth Services Research Group

Faculty of Health & Social CareFaculty of Health & Social Care

The Robert Gordon UniversityThe Robert Gordon University

BackgroundBackground

Professionals’ perceptions of patient involvementProfessionals’ perceptions of patient involvement

Based on 2 LHCCs (Abdn & Abdnshire)Based on 2 LHCCs (Abdn & Abdnshire) Random selection of qualified staffRandom selection of qualified staff Included 18 interviewsIncluded 18 interviews

4 small group discussions4 small group discussions

7 focus groups7 focus groups Interviews/Groups audiotapedInterviews/Groups audiotaped

FindingsFindings

Patient & public involvement often blurred into onePatient & public involvement often blurred into one ‘‘It’s the same’It’s the same’ GP GP

Majority of staff defined involvement in terms of public Majority of staff defined involvement in terms of public involvement ie. public consultationinvolvement ie. public consultation

Concerns raised re representiveness of voices heardConcerns raised re representiveness of voices heard ‘‘I can think of two or three people that would love to come in here I can think of two or three people that would love to come in here

and tell us how to run our practice’and tell us how to run our practice’ GP GP

Defined in terms of techniques e.g Defined in terms of techniques e.g

‘‘well… the thing that springs to mind is focus groups’well… the thing that springs to mind is focus groups’ Nurse Nurse

Scottish ExecutiveScottish Executive

‘Services need to be responsive not just to the ‘Services need to be responsive not just to the needs of individual patients but also to the needs of individual patients but also to the preferences of the public at large’preferences of the public at large’

‘To redesign services from the perspective of ‘To redesign services from the perspective of patients - and to reflect this in all aspects of patients - and to reflect this in all aspects of health service planning communities want; and health service planning communities want; and consulting them over proposals for change’consulting them over proposals for change’

Designed to Care, Designed to Care, 19971997

Scottish ExecutiveScottish Executive

‘We value the NHS as a public service which ‘We value the NHS as a public service which belongs to the people. Patients, staff and belongs to the people. Patients, staff and communities have a right to be involved in communities have a right to be involved in decisions which affect them’decisions which affect them’

Our National Health, Our National Health, 19981998

DoH (1998) argues it’s only through DoH (1998) argues it’s only through involving communities that a better involving communities that a better understanding of how local services need understanding of how local services need to change & develop will happento change & develop will happen

NHS Executive, NHS Executive, 19981998

Patient Focus & Public InvolvementPatient Focus & Public Involvement

A patient - focused NHS, therefore will:A patient - focused NHS, therefore will:

‘talk with USERS, the WIDER PUBLIC and ‘talk with USERS, the WIDER PUBLIC and COMMUNITIES’COMMUNITIES’

‘‘It is often helpful to distinguish between It is often helpful to distinguish between involving people as individual involving people as individual users/patients and carers, and involving users/patients and carers, and involving them as groups e.g. users/patients’ them as groups e.g. users/patients’ groups or as citizens.’groups or as citizens.’

Ridley & Jones, Ridley & Jones, 20022002

TerminologyTerminology

PeoplePeople usersusers public (wider public)public (wider public) patientspatients citizenscitizens communitycommunity

DICHOTOMY: INDIVIDUAL Vs EVERYONEDICHOTOMY: INDIVIDUAL Vs EVERYONE

Disease:Disease: concerns only the individual concerns only the individual patientpatient

Health:Health: concerns everyoneconcerns everyone

EVERYONE SHOULD BE INVOLVED EVERYONE SHOULD BE INVOLVED

‘It is the task of the whole of society rather than ‘It is the task of the whole of society rather than the domain of a single profession or party’the domain of a single profession or party’

Laaser et al, 1985Laaser et al, 1985

‘‘The people have a right and duty to The people have a right and duty to participate individually and collectively in participate individually and collectively in the planning and implementation of their the planning and implementation of their health care’health care’

WHO, 1978WHO, 1978

Definition of communityDefinition of community

‘Collections of individuals bound together ‘Collections of individuals bound together by natural will and a set of shared ideas by natural will and a set of shared ideas and ideals’and ideals’

AristotleAristotle

Patients vs PublicPatients vs Public

72% who had used hospital care were satisfied72% who had used hospital care were satisfied 56% who had not56% who had not

Harrison et al, Harrison et al, 19971997

‘‘There can be no substitute for the real There can be no substitute for the real world knowledge of service users’world knowledge of service users’

Herd & Stalker, Herd & Stalker, 19961996

Patients/Public: Who represents them?Patients/Public: Who represents them?

‘It’s very difficult (to consult). There are people ‘It’s very difficult (to consult). There are people who have, who can act as agents for patients, who who have, who can act as agents for patients, who are not doctors. I think we should be using them. are not doctors. I think we should be using them. The Local Health Council is a prime example, The Local Health Council is a prime example, elected representatives of communities are elected representatives of communities are another group… Hopefully they will look at the another group… Hopefully they will look at the spectrum of patients rather than just those people spectrum of patients rather than just those people in pressure groups… it’s getting a balance. in pressure groups… it’s getting a balance. Probably 10% of the population will be very Probably 10% of the population will be very vociferous and 90% of the population are vociferous and 90% of the population are extremely apathetic.’extremely apathetic.’

GP GP

A SurveyA Survey

‘a technique of data collection that is systematic ‘a technique of data collection that is systematic and structured questioning, either by interview and structured questioning, either by interview or by questionnaire, of a relatively large number or by questionnaire, of a relatively large number of respondents’.of respondents’.

A SampleA Sample

The selection of some units of a population to The selection of some units of a population to represent the whole populationrepresent the whole population

(It is essential to attempt to ensure that the (It is essential to attempt to ensure that the sample is as TYPICAL as possible)sample is as TYPICAL as possible)

Patient surveysPatient surveys

Current users may differ from previous patient populationsCurrent users may differ from previous patient populations

sincesince

Diagnostic techniques changeDiagnostic techniques change

procedures changeprocedures change

new demographic trends emergenew demographic trends emerge

changes in policies regarding suitability/eligibilitychanges in policies regarding suitability/eligibility

RepresentationRepresentation

Guidance 2002Guidance 2002

Initial stage of consultation process .. Key groupsInitial stage of consultation process .. Key groups

user groupsuser groups drs & clinical staffdrs & clinical staff nurses & other prof staffnurses & other prof staff TUsTUs prof/al advisory ctteesprof/al advisory cttees TrustsTrusts community groupscommunity groups Local Health Councils/other patient rep groupsLocal Health Councils/other patient rep groups LAsLAs

‘‘Consultation can produce results that do not Consultation can produce results that do not represent the views of local people as a whole’ [!]represent the views of local people as a whole’ [!]

‘It is.. very important to consider the make up of the ‘It is.. very important to consider the make up of the local community and to avoid the risk of token local community and to avoid the risk of token consultation or involvement.’consultation or involvement.’

Scottish Office Health Department. Consultation & Public Scottish Office Health Department. Consultation & Public Involvement in Service Change - Draft Interim Guidance, 2002Involvement in Service Change - Draft Interim Guidance, 2002

No single form of participation or definition of No single form of participation or definition of community is adequate for general practicecommunity is adequate for general practice

Both are elastic and contested conceptsBoth are elastic and contested concepts

BrownBrown, , 19941994

Involving PeopleInvolving People

‘When I use a word’, Humpty Dumpty said in a ‘When I use a word’, Humpty Dumpty said in a rather scornful tone, ‘it means just what I choose rather scornful tone, ‘it means just what I choose it to mean, - neither more nor less’.it to mean, - neither more nor less’.

Lewis Lewis CarrollCarroll

Patient Focus and Public Involvement Patient Focus and Public Involvement (2001)(2001)

‘The change required to involve the people of ‘The change required to involve the people of Scotland in their NHS will not happen overnight’Scotland in their NHS will not happen overnight’