‘Public’ versus ‘Patient’ Representation

‘Public’ versus ‘Patient’ Representation Rosemary Chesson Health Services Research Group Faculty of Health & Social Care The Robert Gordon University

Background Professionals’ perceptions of patient involvement • Based on 2 LHCCs (Abdn & Abdnshire) • Random selection of qualified staff • Included 18 interviews 4 small group discussions 7 focus groups • Interviews/Groups audiotaped

Findings • Patient & public involvement often blurred into one ‘It’s the same’ GP • Majority of staff defined involvement in terms of public involvement ie. public consultation • Concerns raised re representiveness of voices heard ‘I can think of two or three people that would love to come in here and tell us how to run our practice’ GP • Defined in terms of techniques e.g ‘well… the thing that springs to mind is focus groups’ Nurse

Scottish Executive‘Services need to be responsive not just to the needs of individual patients but also to the preferences of the public at large’‘To redesign services from the perspective of patients - and to reflect this in all aspects of health service planning communities want; and consulting them over proposals for change’ Designed to Care, 1997

Scottish Executive‘We value the NHS as a public service which belongs to the people. Patients, staff and communities have a right to be involved in decisions which affect them’ Our National Health, 1998

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

Patient Focus & Public InvolvementA patient - focused NHS, therefore will:‘talk with USERS, the WIDER PUBLIC and COMMUNITIES’

‘It is often helpful to distinguish between involving people as individual users/patients and carers, and involving them as groups e.g. users/patients’ groups or as citizens.’Ridley & Jones, 2002

Terminology • People • users • public (wider public) • patients • citizens • community DICHOTOMY: INDIVIDUAL Vs EVERYONE

Disease: concerns only the individual patientHealth: concerns everyone EVERYONE SHOULD BE INVOLVED‘It is the task of the whole of society rather than the domain of a single profession or party’Laaser et al, 1985

‘The people have a right and duty to participate individually and collectively in the planning and implementation of their health care’ WHO, 1978

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

Patients vs Public • 72% who had used hospital care were satisfied • 56% who had not Harrison et al, 1997

‘There can be no substitute for the real world knowledge of service users’ Herd & Stalker, 1996

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

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

A SampleThe selection of some units of a population to represent the whole population(It is essential to attempt to ensure that the sample is as TYPICAL as possible)

Patient surveys Current users may differ from previous patient populations since • Diagnostic techniques change • procedures change • new demographic trends emerge • changes in policies regarding suitability/eligibility

Representation Guidance 2002 Initial stage of consultation process .. Key groups • user groups • drs & clinical staff • nurses & other prof staff • TUs • prof/al advisory cttees • Trusts • community groups • Local Health Councils/other patient rep groups • LAs

‘Consultation can produce results that do not represent the views of local people as a whole’ [!]‘It is.. very important to consider the make up of the local community and to avoid the risk of token consultation or involvement.’Scottish Office Health Department. Consultation & Public Involvement in Service Change - Draft Interim Guidance, 2002

No single form of participation or definition of community is adequate for general practice • Both are elastic and contested concepts Brown, 1994

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

Patient Focus and Public Involvement (2001)‘The change required to involve the people of Scotland in their NHS will not happen overnight’

‘Public’ versus ‘Patient’ Representation