Patient as Participant

1. Patient as Participant European Society for Quality in Healthcare 3rd Spring Workshop May 17th 2001 Balaton, Hungary Stiofan deBurca President ESQH

2. Participation – The Individual Enabling an active role in the care process. Need Traditional engagement of the ‘subject’ as an ‘object’ in his/her management. Increasing awareness through multi-media exposure, education and expectations. Medico-legal culture of litigation.

3. Purpose Shared ownership of process and outcome. Personal responsibility and reducing professional liability. Informed choices on needs v wants

4. Action Partnership approach: shared knowledge and information. collaborative decision making. Input to care planning and implementation: influencing the provider consultation and user perspective Care pathways.

5. Intervening Conditions Knowledge, skills and power differentials User v Expert Provider Dependency role and passivity. Ownership of illness and intervention. Expectations v Realities. Audit – quality – governance limitations

6. Intervention Strategy Assured information re. condition. Routine supported access to recorded information – use of in decision process. Supportive culture and policies in the health care system i.e. partnership through positive action and behaviour.

7. Participation: patients/users The Conditional Matrix Society and the role of the Professions: Power, dominance and control Empowerment, ownership involvement participation sharing...

8. Participation: patients/users Conditional Matrix continued… Clinical autonomy and the professional bureaucracy. Politics of representation and expert roles priorities interests influences Distribution – quality and inequality. Relevance responsiveness and rigour in healthcare systems.

9. Dimensions of Consumerismand Advocacy Individual patient level Service development level. Strategic policy level. National level

10. Underpinning principles Citizens rights and responsibilities own health and well-being worthy of respect. Facilitated dialogue at every level in the process working in partnership: a process of mutual discovery and informed consent...

11. Underpinning principles continued… Manage one’s own life and health journey in ever changing environments develop care competencies challenge the dominant dependency culture Co-operation within user and carer groups and across traditional service boundaries flexible co-operation: challenge to blame and shame culture. (Sang, 2000).

12. WHO: Health for All by the Year 2000 Equity Health promotion and prevention of disease Health for all will be achieved by the people themselves. A well informed, well motivated and actively participating community is a key element for the attainment of the common goal. Co-ordinated action of all sectors Focus on primary health care

13. Qualitative and quantitative questionnaire surveys Interviews Critical incident techniques Observation Mystery client Focus groups Consumer appraisal/audit Patient participation groups Consumer panels and health forms Social marketing Community health projects Rapid appraisal techniques Consulting Communities

14. Change Agents: Create and sustain partnerships Enablers: managers and professionals (authority, control – power, diversity) new approaches to leadership and stewardship. Practitioners: mutual dependency – potential co-workers. Facilitators: independent development workers. Influencers: educators, communicators

15. Change Practice Participatory Action Research. Consumer Advocacy Group on Clinical Trials. Long-term medical conditions alliance. Cancer-link. Patient Partnership Strategy