CITIZEN PARTICIPATION IN A NATIONAL HEALTH SERVICE: EXPERIENCES AND RESEARCH FINDINGS FROM ENGLANDProfessor Patricia WilsonUniversity of KentUnited Kingdom

Citizen participation – what do we mean?

Patient participation in care

For example; self care, shared decision making

CARE

Citizen participation in planning new services

and monitoring existing services

For example; lay members on hospital boards or community

health trustsCommissioning & provision of services

Citizen participation in health policy

For example: lay member on a National Health Service committee

POLICY

Citizen participation in planning new services

and monitoring existing services

For example; lay members on hospital boards or community

health trustsCommissioning & provision of services

The Organisation of Health and Social Care in the UK

• NHS health care– Free (or subsidised ) at the point of delivery – Funded by taxes to central government– Commissioned by local primary care

clinicians or a central commissioning board – Provided by local NHS organisations or

independent services (e.g. family doctors) under contract

• Social care (social services)– Subsidised from public funds to those on low

income– Funded by taxes to central government and

local government– Commissioned by local government – Provided by local government or private

businesses

Joseph

SarahFamily doctor

Community nurse

Local hospital

Voluntary group

Care workers

Care home

Public health

SarahFamily doctor

Community nurse

Local hospital

Public health

Health services

• Commissioned by Clinical Commissioning Groups

• Clinical commissioning groups are made up of local practices of family doctors

Sarah

Family doctor practice

Public health

Patient Participation Group

Clinical commissioning group

1 – 3 lay members

Patient forum

Sarah

Community services

Local hospital

Public health

Clinical commissioning group

Hospital BoardLay members

Patient groups

Sarah

Social care

Public health Social care and public

health

• Provided by local authority

• Democratically elected

• Health and Well Being Boards

Health and Well Being Boards

• In a local area bring together health services, public health, and social care

• Members include elected representatives and Local Healthwatch

• Main task is to plan how best to meet the needs of their local population and tackle local inequalities in health.

Joseph

SarahFamily doctor

Community nurse

Local hospital

Voluntary group

Care workers

Care home

Public health

Citizen participation in English health & social care

What do we know?

• Embedded as part of the health and social care infrastructure

• Very complex

• Many different ways of working

Researching citizen participation

Moral reasons

Consequential reasons

Policy reasons

Research foci

MORAL

“working with” rather than “doing to”

Public satisfaction with levels of participation.

VoiceAccessAgenda

Deliberation

CONSEQUENTIAL

improved services and outcomes.

Citizen participation

impact on services

POLICY

supported and embedded citizen participation as normal practice.

Shared understandingCommitmentResourcesSystematic evaluation

EVOC projectAimExamine how commissioners of health services enable voice and engagement of people with Long Term Conditions and identify what impact this has on the commissioning process and pattern of services.

Methodology• Three long term conditions

• Diabetes• Long term neurological conditions• Inflammatory arthritis

• Three case study sites around England• Sample

• 26 Commissioners• 15 Providers • 78 Patients and service user representatives• 4 Local Authority public participation leads

• Workshops, interviews, focus groups, observation, documentary analysis

What does citizen participation mean to people?

The public:• Personal ethosWhat is means to me personally is, I’m very much a community person, my community involvement has been all my working life ...• Citizen participation– stating the obviouswe’re the people using the service and know what is

needed really • Service improvement…making a difference, making a change, helping to improve services, saving costs, saving time

Commissioners• Rational approach to decision makingIts right that we should do it because we’re going to face in

macro terms the health economics for this country are we’ve got an increasingly expensive population in terms of health need, the health burden will only increase…so we’re going to have to make some very difficult decisions …and we’re only going to do that if we bring the population on board with us

• As a way of avoiding criticismif they feel that things have been changed and they’ve not been involved…. then you’re more likely to get obstruction or criticism….

Access• Becoming more formalised

• Implications:

Who sets the agenda?Influencing the agenda?

do you feel you were able to get anything on the agenda that might not have been there already? I haven’t tried if I’m honest.

lay member

Deliberation• An assumption of personal agendaall they say is how they have got rights… and they’ve paid their taxes…it all goes back to what they’re personally going to get and not get. I think they’ve just been too empowered with this idea of informed choice and rights.

Family doctor• Having to fight your corner … I’d phone the local newspaper and say “you’ve (local hospital) had all this government public money….and we’ve not seen any results from it.” Is that something you often use, is that you know a tool in the armoury, the local media? Certainly.

People with rheumatoid arthritis

Evidence of outcomes• Primary school based protocol for diabetesParental concern Parental Group patient forum

• Slow uptake because voluntary for schools to adopt

• Evidence of sabotage by other citizens

Model 1: The “one-off” citizen participation

Health service planning

Models of citizen participation (RAPPORT study)

Model 2: Fully intertwined citizen participation

Health service planning

Model 3: Outreach citizen participation

Health service planning

Conclusions• Effective citizen involvement is dependent on:

• Being embedded as part of everyday practice

• Enabling citizen’s to have a voice through • Ensuring access to all• A say in the local agenda• Listening to citizen’s stories

• Evaluating citizen participation impact on health service planning and delivery

Conclusions • In England:

• Embedded in the NHS structure• BUT can be tokenistic with many citizens’ still seldom heard • Some good examples of practice

• In Spain?• Royo S. et al 2011 “Citizen participation in German and Spanish

local governments: A comparative study” Int J Public Administration, 34, 3, 139-150

• Gené-Badia et al J. 2012 “Spanish health care cuts: Penny wise and pound foolish?” Health Policy, 106, 23-28

• Blakeley, G. 2010 Governing Ourselves: Citizen Participation and Governance in Barcelona and Manchester. International Journal of Urban and Regional Research, 34, 130-145.

Gracias por su atención

p.m.wilson@kent.ac.uk