citizen participation in a national health service: experiences and research findings from england...
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CITIZEN PARTICIPATION IN A NATIONAL HEALTH SERVICE: EXPERIENCES AND RESEARCH FINDINGS FROM ENGLANDProfessor Patricia Wilson
University of Kent
United 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 careWhat 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 project
AimExamine 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 ethos
What 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 obvious
we’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 making
Its 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 criticism
if 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 diabetes
Parental 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.
