CITIZEN PARTICIPATION IN A NATIONAL HEALTH SERVICE: EXPERIENCES AND RESEARCH FINDINGS FROM ENGLAND Professor Patricia Wilson University of Kent United Kingdom

Citizen participation – what do we mean? CARE

Commissioning & provision of services

POLICY

Commissioning & 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 Sarah Family doctor Community nurse Local hospital Voluntary group Care workers Care home Public health

Sarah Family 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 Board Lay members Patient groups

Sarah Social care Public health Social care and public health Provided by local authority Democratically elected 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 Sarah Family 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

Research foci

EVOC project Aim Examine 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 agenda all 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, Gené-Badia et al J “Spanish health care cuts: Penny wise and pound foolish?” Health Policy, 106, Blakeley, G Governing Ourselves: Citizen Participation and Governance in Barcelona and Manchester. International Journal of Urban and Regional Research, 34,

Gracias por su atención