Research and the Struggle for Health

Fran BaumFlinders University People’s Health Movement

Aims of the session

1. Examine how research funding and priority setting supports the status quo in approaches to global health

2. Consider the dominant paradigms of research in public health

3. Propose alternative research practices that would support people centred movements in their struggle for health

The issue for the struggle

What is accepted as evidence? Who defines this? How is this position maintained? How does PHM establish the

legitimacy of new forms of evidence?

how research funding and priority setting supports the status quo in approaches to global health –

Global Health Research not equitable 10/90 split in terms of disease Most research on downstream factors Most spent in rich countries Social, economic and environmental determinants of

health research and applied research, intervention research are funded in minimal way

Public good research spends little on research transfer Critical theory research in health hardly ever funded WHY?

Maintenance of inequity in global health research

Medical power in framing problems – clinical individualised approach to disease

Peer review system Criteria for demonstrating impact on health

outcomes is limited Complexity of research designs for upstream

determinants/intervention studies Lack of skills and training in community based

research and qualitative research

Medical power in framing problems

Overwhelming medicine dominates our thinking about health/disease

Has controlled national health and medical research budgets in most OECD countries

Solutions to problems are framed in terms of strategies that tackle disease directly rather than in broader terms that consider underlying reasons

Health & Medical Research Funding Bodies

Globally focus on medicine little attention to “health” Methodologies largely uncontested as positivist (some

change only) Lip service to alternative approaches Social science very poor cousin Community driven research very unlikely Historical spending patterns Committees focus on body parts then one or two for

public health

Peer Review

Has been accepted as strong system for judging quality of research

Increasingly questioning of the system and of the evidence base for its effectiveness (BMJ, The Lancet, Cochrane)

Criticism of Peer Review

Lack of evidence for its efficacy Power of elite researchers Definition of excellence Lack of transparency Conflicts of Interest Inability to detect frauds Maintaining status quo Stifles innovation

Ref: Horrobin Lancet 1996,438(9037): 1293-95; Wood(1997) Aust. Res. Council Report; Demicheli et al., Cochrane Review2003

Criteria for demonstrating impact of research is limited

Impact of medical intervention evaluation is nearly always short term Longer term evaluation is complex, methodologically difficult Especially true of comprehensive PHC initiatives Little investment in applied research Social, economic and environmental determinants take a long time

to impact and assigning causality is very hard and contested Remember lessons from McKeown, Szreter

Methods reflect social & political context

“The problem of appropriate use of method is not trivial. We have argued that it profoundly shapes what we know, which effects what we can do in public health”

Kavanagh, Daly & Jolley (2002)

Kavanagh et al 2002

Gatekeepers in Research Process

Need research skills in complex designs and community based research

• Most health & medical research conducted in narrow discipline

• Means vertical, selective focus is more likely• Very little across disciplines• Community based research seen as second class• Silo, single issue, disease based research is

privileged

Little attention to research transfer

• Many barriers to research affecting policy and practice

• Researchers rewards focus on academic publications

What prevents transfer happening?

• Process starts too late – discussions about research should start with what is researched? And then a real relationship developed

• Fundamentally different world view between users of research and researchers

• Researchers don’t differentiate between different users of research – “one-size fits all” dissemination Need user friendly format

• Lack of understanding between researchers and policy makers and decision makers

Dominant paradigms of research in public health

• Positivistic• Epidemiological methods• Assumption of being “value-free”• Lack of theory • Lack of community involvement in

priority setting or interpretation of research

Strengths of Epidemiology

• Establishing causal relationships

• Determining risk factors

• Enabling investigation of disease patterns at population level

• Highlighting patterns of disease

Limitations of Epidemiology

• Understanding complexity (webs of causation)

• Concentrates on risk factors and disease association rather than going up stream and looking at broader causal factors

• Doesn’t explore ‘black box’ of experience and in-depth understanding

Limitations of the traditional scientific method when applied to community-based research

• Randomisation is rarely possible - ethically or practically

• Controlling for sufficient variable to provide validity is usually not possible

• The quest for scientific purity has meant the method dictates the problem rather than the other way around

• The complexity of the social world means that reductionist approaches are inadequate

Alternative research practices that might/try to support people-centred

movements in their struggle for health

Examples of these practices

• Co-operative Research Centre in Aboriginal Health

• Designing national research effort to support the struggle for health in economically poor countries

• Participatory Action Research

CRC for Aboriginal Health

• Indigenous controlled organisation• 7 years Federal Government funding

(2003-10)• Involves community controlled health

services• Government Agencies responsible for

health• 5 Universities

CRC-Aboriginal Health

Emphasis on Research Transfer and making a difference

Significant community input to research

CRC is controlled by Indigenous people

Research Programs

Healthy Skin

Social Determinants

PHC

Social and Emotional well-being

Chronic disease

Mortality of Indigenous Australians

• 20 year gap in life expectancy

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10

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60

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Aborig

inal

women

Aborig

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men

Non-A

bor w

omen

Non-A

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Infant Mortality: indigenous

• Infant mortality rate 2.5 times higher for Indigenous compared to non-Indigenous Australians

• Variation between states: Northern Territory 19.2, South Australia 8.1

Disease burden of Indigenous

• Higher rates of diabetes, circulatory disease, cancers, communicable diseases, mental illness, violence, substance abuse, suicide

Valuing other forms of knowledge

Pat said of women’s basket weaving “What they produce is something

that’s not just utilitarian, nor is it just a thing of aesthetic value. It’s an expression of an Indigenous intellectual tradition: an application of knowledge and a way of doing things that’s been seasoned by time and handed down through countless generations”

These traditions form one of the support structures that’s nurtured the Indigenous members of the Board of the CRCAH.

For us, and for the people we serve, they are real life; they are profoundly important.

And that is one of the things that makes the CRC different…it’s central to what we do”Pat Anderson, Chair CRCAH

Designing national research effort to support the struggle for health in economically poor

countries

Designing national research effort to support the struggle for health in economically poor countries

• Don’t reproduced flawed research structures of rich countries in other countries

• Encourage research to answer question of what creates conditions for health and what works in doing this

• Rethink national/international funding of health rather than disease/immediate risk factors

• Process to determine what research should be priority

• More health services research on what works in what contexts

• Ensure peer review of grants includes people who speak from community perspective or those likely to be affected by research

• Design system that encourages collaboration rather than competition

Designing national research effort to support the struggle for health in economically poor countries

• More social science to ensure detailed understanding of social and economic processes affecting health – especially trade relations and interaction between local economies, trade and health

• More detailed well-designed intervention studies on health improvement via economic and social processes

• Cross-national case studies

Designing national research effort to support the struggle for health in economically poor countries

Designing national research effort to support the struggle for health in economically poor countries

• Real focus on ensuring research affects practice and building links between researchers, practitioners and policy makers

• Funding for this and deliberate planning and assistance for this to happen

• Assessment of research success in transfer should be considered in track record of researcher

Participation in Research

• Fits with philosophy of HFA 2000/PHM and progressive struggle for health

• Lay and professional knowledge complementary• Avoids “Data raids”• Potential to be emancipatory• Relevant for all types of research - quantitative

and qualitative?

PAR: Definition

Participatory action research is also about more than generating knowledge. It is also a process of “education and development of consciousness and of mobilisation”

(Gaventa, 1988, p.19)

History: Tool of Liberation

• PAR as a tool of liberation/empowerment and as deriving from Paulo Freire’s work on critical pedagogy.

• Dynamic process by which critical thought followed by action leads to critical consciousness.

• Contrast such research approaches with less dynamic ones that focus on removing data and information from its context.

De Koning & Martin (1996)

Applications of PAR to health

• Improving understanding of health and illness as a basis for popular struggle for health

• Workplace improvement of practice through reflection (critical, constructive reflection based on group working together for change)

• Participatory evaluation research• Needs and capacity assessment and

planning• Studying evolving processes e.g.

introduction of reform

Process of PAR

• Plan of action developed from critical reflection

• Implemented

• Process observed in context

• Reflection

• New Plan, New Action

And so on through the cycle…………….

What is PAR?

• Spiral of reflection, action, research

Dilemmas Associated with use of PAR

• Power

• Validity

• Generalisability

• Data ownership

• Organisational politics

• Biomedical perspective

• New skills for participants

Will the CSDH offer leadership?

• Measurement Knowledge Network is trying to develop “new public health” knowledge

• Consensus statement that should help struggle to establish legitimacy of alternative approaches

Disease-based definition of

Clinically based, mono-causation

Emphasis on outcomes

Experimental evidence as the gold standard

Focus on internal validity

Collecting evidence in isolation (controlling for “confounders”)

Broader definition of health

Web of causation

Emphasis on pathways and processes

Focus on external validity

Viewing and collecting evidence in context, and recognising interaction

“Traditional” public health evidence “New” public health evidence

Knowledge Networks: Gathering 'New' PH Evidence