Alan Jones V Humankind: The case for consumer participation Nicky Barry Senior Project Worker & Consumer Support Coordinator

What is participation? Participation occurs when consumers, careers and community members are meaningfully involved in decision making about health policy and planning, care and treatment, and the wellbeing of themselves and the community Department of Human Service, Doing it with us no for us Strategic Direction

Key principles of participation   Trust   Respect   Openness   Equal opportunity   Advocacy and support   Responsiveness   Shared ownership and accountability   Dissemination   Evaluation

Health and Human Rights   The Declaration of Human Rights recognises the right of every individual to live with dignity.   The Victorian Charter of Human Rights also recognises these rights for residents of Victoria.   The Australian Charter of Healthcare Rights has been developed to identify the rights of citizens using the healthcare system.   The participation of consumers in the planning, design, delivery and evaluation is the best way to ensure the inclusion of a Human Rights perspective in healthcare.

The Social Determinants of Health Not all issues connected to a person’s health are related to their physiology. The World Health Organisation has articulated the “Social Determinants of Health” as also being critical in defining a person’s health status and ability to access healthcare. What are the social determinants of health?????

Benefits for the consumer   Increased knowledge about health care and treatment : able to make better informed decisions   Recognises the consumer’s human rights   Assists to improve individual and population health outcomes

Benefits to the organisation   Provision of services that are based on needs and issues relevant to the needs of the consumer.   Better clinical outcomes   Increase in quality and safety of service provided   Improved client experience   Opportunities for innovation   Creates community connections

Examples of community participation in healthcare IndividualProgramOrganisational Consumer led care plans Provision of clear information about patient rights/responsibilities, etc Options for communication/decision making Opportunities for feedback (all of these processes supported) Community needs analysis regularly undertaken in regards to service provision/delivery Involvement of consumers in program planning, program review/evaluation Consumers involved in the development of clinical guidelines and research projects Community needs analysis in relation to strategic planning Consumer involvement in advocacy Community Advisory Committee Consumer involvement in staff recruitment

How does this relate to “our” consumers? What is the one common element that unites every individual we are dealing with in terms of there issues and there recovery process?

Recovery is also a continuum While we can use models as a starting point, the experience of each consumer (and each worker) will be different. Using a participatory model allows us to be inclusive of perspective and to work in partnership towards meaningful “success”.

What does an inclusive program look like? An inclusive program: builds capacity for participation listens to the community/individual and responds to what they need works together with the community/individual to create change is dynamic

Inclusive program design What do we take in to account when designing a individual and community program? Why? When and where do we include the consumers in this process?

“Life is not just a series of calculations and a sum of total statistics, it’s about experience, it’s about participation, it is about something complex and more interesting than what is obvious.” Daniel Libeskind

Challenges “Conflict cannot survive without your participation.” Wayne Dyer

More information on Consumer Participation Health Issues Centre website How to develop a community participation plan