The Craft of STS Research: Studying Patient Groups and Health Movements

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The Craft of STS ResearchStudying Patient
Groups and Health Movements

• Steven Epstein
• Sociology / Science Studies
• University of California, San Diego

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AIDS activismACT UP New York Paris
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Alternative medicine
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Autism activism
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Breast Cancer Action
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Deaf activism
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Genetic Alliance
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Infant loss support groups
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Steven Epstein, Impure Science
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Classic STS questions

• How is new knowledge or technology produced?
• Through what processes does knowledge become
  accepted as credible?
• How are controversies over knowledge or
  technology settled?

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New STS questions

• Who gets to be an expert?
• What roles do social movements play in science?
• Can the politics of knowledge be made more
  democratic?

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Social Movements in Health
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Health, the Environment and Social Movements
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Patient Organization Movements
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Packard et al., Emerging Illnesses and
Society(communities of suffering)
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Reproductive health activismAdele Clarke,
Disciplining ReproductionCharis Thompson, Making
Parents
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Toxic waste activismBarbara Allen, Uneasy
AlchemyBrown and Mikkelson, No Safe Place
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Womens health activismCarol S. Weisman, Womens
Health Care
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Repetitive strain injury activismHilary Arksey,
RSI and the Experts
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Environmental illness activismSteve Kroll-Smith
and H. Hugh Floyd, Bodies in Protest
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Infant loss support groupsLinda L. Layne,
Motherhood Lost
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Occupational health activismMichelle Murphy,
Sick Building Syndrome and the Problem of
Uncertainty
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Breast cancer activismSahra Gibbon, Breast
Cancer Genes and the Gendering of Knowledge
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Research questions

• How do disease constituencies arise, how do
  they forge illness identities as a collective
  accomplishment, and how do they use those
  collective identities as the basis for political
  mobilization?
• How do the actions of patients or their lay
  representatives change the way that medicine is
  practiced, health care services are distributed,
  biomedical research is conducted, and medical
  technologies are developed?

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Research questions

• What sorts of challenges do these lay actors
  pose to the authority of credentialed experts,
  and what kinds of alliances with professionals do
  they construct?
• What sorts of politics of the body do such
  groups put into practice, and how are bodies
  transformed as a result?

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Research questions

• When does health activism of this kind result in
  the extension of medicalized frames of
  understanding, and when does it contest such
  medicalization?
• How do patient groups intervene in the web of
  relationships that connect biomedical
  institutions both with the market and with the
  state?

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Research questions

• What are the effects of these groups on the vast
  social inequalities that characterize the field
  of health and health care?
• What conceptions of medical science do patient
  groups promote and contest, and what visions do
  they articulate of what it means to be healthy?

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Outline

• Why proliferation?
• Definitions
• Methods
• Criteria for comparing and contrasting
• Effects and consequences
• Directions for future scholarship

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Outline

• Why proliferation?
• Definitions
• Methods
• Criteria for comparing and contrasting
• Effects and consequences
• Directions for future scholarship

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Patient groups and health movements as central
examples in recent STS approaches
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Callon RabeharisoaConcerned groupsResearch
in the wild
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Latour, Collective experiments
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Jasanoff, Co-production
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Irwin Michael Elam BertilssonScientific
citizenship
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Frickel MooreNew political sociology of
science
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Collins and EvansThird wave studies of
expertise
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Oudshoorn PinchHow Users Matter
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Changing terrain of biomedicine

• Innovations in molecular biology, genomics,
  bioinformatics, and new medical technologies
• Intensification of clinical research practices
• Public and private funding for biomedical
  research
• Evidence-based medicine standardization
• Global pharmaceutical industry
• Dreams of human enhancement or perfectibility

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Outline

• Why proliferation?
• Definitions
• Methods
• Criteria for comparing and contrasting
• Effects and consequences
• Directions for future scholarship

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Patient groups linked to
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Health social movements (Brown et al.)
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Consumer movements in health (Bastian)
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Organizing around pain and loss experiences
(Allsop et al.)
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Communities of suffering (Packard et al.)
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Blurry boundaries with

• Science advocacy movements pressing for research
  on specific biomedical topics, such as stem cells
• Movements advocating democratic participation in
  priority-setting for public funding of medical
  research
• Ecological and environmental justice movements
  that have significant health implications

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Blurry boundaries with

• Movements for new therapeutic directions, such as
  efforts to advance complementary and alternative
  medicine
• Movements that work with private-sector firms to
  develop alternative health products

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Outline

• Why proliferation?
• Definitions
• Methods
• Criteria for comparing and contrasting
• Effects and consequences
• Directions for future scholarship

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STS principles

• Follow the actors
• Attend to both people and things
• Pay close attention to controversies and how they
  are settled

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Data sources and research techniques

• Single- and multi-sited ethnographic methods
• Content analysis
• Questionnaires
• Focus groups
• Textual analysis
• Biographical approach
• Network analysis
• Online data
• Computerized information tools
• Participatory research

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Outline

• Why proliferation?
• Definitions
• Methods
• Criteria for comparing and contrasting
• Effects and consequences
• Directions for future scholarship

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Typologies (Brown et al.)

• Health access movements
• Constituency-based health movements
• Embodied health movements

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Axes of variation

• Relationship to medicalization

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Demanding medicalization

• Chronic fatigue
• Fibromyalgia
• Multiple chemical sensitivity
• Post partum depression
• Sick building syndrome
• Repetitive strain injuries
• gt Contested emergent illnesses
• gt Medically unexplained physical symptoms (MUPS)

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Resisting medicalization

• Deaf activists
• Gay liberation activists
• Intersex activists
• Anti-psychiatry activists
• Fat acceptance activists
• Disability activists

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Axes of variation

• Relationship to medicalization
• Group formation process
• Social organization
• Independence
• Militancy
• Goals

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Goals

• Finding (or rejecting) medical cures
• Improving the quality of life of ill people
• Cultivating practical advice for managing illness
• Raising funds for research
• Changing medical practices or priorities
• Opposing stigmatization and exclusion
• Changing cultural meanings of health, illness,
  the body, and expertise

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Outline

• Why proliferation?
• Definitions
• Methods
• Criteria for comparing and contrasting
• Effects and consequences
• Directions for future scholarship

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Effects and consequences

• Conceptualization of the disease
• Patients management of their illnesses
• Attitudes and practices of health professionals
• Research process

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Effects on the research process

• Raising and distributing research funds
• Making decisions about research directions
• Promoting ethical treatment of research subjects
• Policing ethical abuses in research
• Challenging specific research techniques
• Creating disease and treatment registries
• Organizing conferences
• Coauthoring publications
• Pioneering new models of participatory research

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Conceptions and uses of knowledge

• Local knowledge (Geertz)
• Subjugated knowledges (Foucault)
• Situated knowledges (Haraway)
• gt Lay expert
• gt Tools and technologies

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Effects and consequences

• Conceptualization of the disease
• Patients management of their illnesses
• Attitudes and practices of health professionals
• Research process
• State policies

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Steven Epstein, Inclusion
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Effects and consequences

• Conceptualization of the disease
• Patients management of their illnesses
• Attitudes and practices of health professionals
• Research process
• State policies
• Corporations and markets
• Cultural effects
• Incorporation and cooptation

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Outline

• Why proliferation?
• Definitions
• Methods
• Criteria for comparing and contrasting
• Effects and consequences
• Directions for future scholarship

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Directions for future research

• Case comparisons
• Globalization and transnational activism
• Movement/countermovement dynamics
• Periodization
• Insiders and outsiders
• Inequalities and health disparities