Improving Patient and Community Empowerment: Participatory Action Research as an Alternative Approach

1. Improving patient and community empowerment: participatory action research/learning as an alternative approach Dr. Lai Fong Chiu Senior Research Fellow Institute of Health Sciences & Public Health Research University of Leeds U.K. Co-ordinator of Working Group on Patient & Community Empowerment WHO Migrant Friendly and Culturally Competent Hospitals Task Force

2. "If the living, experiencing being is an intimate participant in the activities of the world to which it belongs, then knowledge is a mode of participation, valuable in the degree in which it is effective. It cannot be the idle view of an unconcerned spectator." • [Dewey, J. (1916) Democracy and Education, p.338]

3. Improving patient and community empowerment: some concerns • Witnessing the confusion of bio-medical paradigm and the participatory paradigm in the generation of knowledge and practice • Centrality of positivistic methods undermining pluralism in methods needed in human sciences • Interventions to understand PCE tend to be a linear process • Programmatic and experimental approach -lack of feedback or accountability (ethics) • Theoretically and methodologically unsound e.g. Ethnic categories Is migration an experience or a variable?

4. improving patient and community empowerment: some concerns • Widening of theory, research and practice gap • Notion of knowledge is cumulative- rather than reflexive & reflective • Concentration on outcomes – how do you measure empowerment? • So, the practitioners continue to stay in the reactive mode • Failing to grasp the notion of participation as pivotal

5. we accept that… • Empowerment means an enabling process to facilitate patient and community to gain control over their own health • Participation is crucial to its success… but…

6. Why? Who? How? are seldom clearly defined • To what purpose do people participate? • Who are the actors? • the researcher? • managers? • patients? • the community? – then what is a community? • How do people participate • consultation meetings (window dressing) • co-operation (exploitation) • co-learning (sharing of knowledge) • collective action

7. If we value experiences and practice – our own, patients’, and communities’… • How can practical knowledge be generated? • Does experience = knowledge? • Is it valid? • anecdotal rather than qualitative • cannot be generalised • how do others judge its truth? • So what is this thing called ‘knowledge’ anyway? • epistemological question – the notion of ‘truth’ • how do we know?

8. Participatory Action Research as an alternative approach to knowledge Appropriate for social transformation • Philosophy of pragmatism – experiences, practice and action form the basis of all knowledge • Extended epistemology experiential, representational, propositional (theoretical) and practical knowledge • Action, collective action, about participation and empowerment

9. Extended epistemology • “Experiential knowing as the foundation of all the other forms- the person experiences a felt encounter, which is grasped and presented intuitively, expressed propositionally and extended into practical action. Action creates a new experience of felt encounter and the cycle begins anew. Practical knowing is deemed to be ‘the higher branching and flowering out of, and bearing fruit of the lower” (Heron,1996) Practical Propositional representational Experiential

10. Empirical advantages • Focus on practical problem • Problem solving • Solution testing • Involving others (knowledge creation is not a lone venture…..PhD training???) • Pluralism in methods • quantitative, qualitative, unconventional e.g. drawing, visual methods, mapping • Knowledge thus created serves practice

11. Effectiveness - what works • Non-linear structures, acknowledge dynamism complexity of the real world • Focus on process and outcomes • Historical synthesis through iterative process • Acknowledge context dependence of interventions • who, how and what of participation • Generalisation versus transferability (take-home value) • modus operandi - processual knowledge is transferable • Knowledge becomes self-generated • More likely to cope with future change

12. Conclusions • Embrace Participatory Action Research Paradigm to understand empowerment and to practice empowerment • Closing the gaps between theory, research and practice • Collective production of knowledge • Knowledge to serve practice • Participatory democracy

13. Debate & Discussion welcome www.healthcommunication.leeds.ac.uk Email: l.f.m.chiu@leeds.ac.uk IDEA Workshop, Warwick University, UK