ABOUT EVIDENCEBASED ACTIVISM
Madeleine Akrich and EPOKS members
EPOKS: a European collaborative project
France (CSI)
Ireland (Cork)
Madeleine Akrich (Childbirth, ADHD)
Vololona Rabeharisoa (RD, AHD)
Florence Paterson (RD)
Frédéric Vergnaud (RD)
Claire Edwards (ADHD)
Maire Leane (Childbirth)
Orla O’Donovan (AD)
Etaoine Howlett (ADHD, Childbirth)
UK (Lancaster)
Portugal
Celia Roberts (Childbirth)
Imogen Tyler (Childbirth)
Candice Satchwell (Childbirth)
João Nunes (Childbirth, RD)
Angela Filipe (Childbirth, RD)
Marta Roriz (Childbirth, RD)
UK (Durham)
Tiago Moreira (AD)
From where do we start?
• Patients as “experts of experience”
• Emergence of new forms of activism
• “treatment activism”/ “war on disease”: engagement of POs in
biomedical research
• Emergence of “lay experts” and redistribution of competencies and
prerogatives between patients and experts
• Patients as specialists’ partners
• Articulating “experiential expertise” with “lay expertise”
• Transformation of identities, experiences, conditions as a result
of people’s engagement in biomedical knowledge
• Biomedicine as part of people’s experience
EPOKS project
• Investigating the role and place of knowledge related
activities in PO’s activities
• PO’s engagement in knowledge governance
• POs, knowledge and health governance
• Four conditions (Rare diseases, Childbirth, Alzheimer
Disease, Attention Deficit Hyperactivy Disorder) differing
as regards:
• POs’ alignment with biomedical world
• The degree of stabilisation of expertise
• A variety of methods, but with an emphasis on practices
The notion of evidence based activism
• Preliminary remarks
• Designates a set of practices; doesn’t compete with other
categorizations of activism
• Evidence = selection and articulation of knowledge statements in
expertise
• Evidence based activism in contrast to Evidence based policy
• Making sense of knowledge activities
• A politics of representation
• A strategy of involvement
• The shaping of an epistemic space
• Conclusion: how it affects our understanding of activism
A POLITICS OF
REPRESENTATION
Representation as an issue for POs
Analysis
based on
testimonies
Testimonies
Surveys
Giving voice: not a straightforward task
Representation work as
enactment of the organization
Constituting problematic issues and delineating actions
Quali-quantitative data as a way to articulate a politics of
numbers without erasing individual experience
Knowledge and politics of representation
• Representation: an issue seriously tackled by POs
• Production of evidence as production of concerned publics
• Gathering an assembly of ‘represented’ people and giving them a voice
through the mediation of various tools
• Production of evidence as production of legitimacy
• Giving empirical credibility to POs’ claims
• Endowing the PO with the weight of the assembly
• A number of other implications:
• (Re)defining causes and structuring POs’ actions
• Holding members’ differing positions in productive tension
A STRATEGY OF
INVOLVEMENT
Reframing issues by articulating evidences
CIANE’s analysis of guidelines on episiotomy
College’s guidelines
CIANE Analysis
Sources
List of complications
Forgotten complications
Severity underestimated
Literature + testimonies
gleaned on an internet
support group
“Prevention of
episiotomy”
Poor framing:
Should privilege
“prevention of perineal
lacerations”
Literature
Perineal massage as a
prevention strategy
No evidence of its
efficacy
Many women don’t like it
Literature
Internet survey
From matters of fact to matters of concern
“Normal isn’t normal”
Reflecting on a category
Making normal birth a
statistical category
Making normal birth a
matter of concern
Elaborating categories and making them operative
Cognitive disability & ADHD in
2005 Disability Act
Translating ADHD in the
language of disability
Educating parents to the
disability framework
Knowledge and the shaping of matters of concern
• Three approaches:
• Entering others’ reasoning and bringing new kinds of evidence
• Producing data on medical practices incorporating a different
perspective
• Elaborating new categories and making them operative
• Involving concerned parties and raising issues
• Articulating different forms of expertise and knowledge
RESHAPING THE
EPISTEMIC SPACE
Acting upon the academic community
Addressing new questions to research
Reshaping the epistemic space
• Two forms of intervention on research policy
• Acting on the structuration of the scientific community
• Identifying zones of ‘undone’ science and formulating new research
questions
• An intervention not limited to certain categories of POs
• Unfolding the web of issues and hypothesis
CONCLUSIONS
Evidence based activism and the
understanding of POs
• Knowledge activities contribute to the definition of what is
at stake:
• the condition itself
• the causes for which the PO struggles
• the issues to be discussed
• the relevant actors to be taken into consideration
• POs as reformers
• Partnering / negociating with scientific and medical collectives
• Beyond medicalisation/ demedicalisation frameworks of
analysis
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