Idea: The traditional subjects of epidemiology become agents when: a. they draw attention of trained epidemiologists to fine scale patterns of disease in that community and otherwise contribute to initiation and completion of studies; b. their resilience and reorganization of their lives and communities in response to social changes displaces or complements researchers’ traditional emphasis on exposures impinging on subjects; and c. when their responses to health risks displays rationalities not taken into account by epidemiologists, health educators, and policy makers.

Compare & Contrast these works from early 1990s– Brown: Popular epidemiology (USA) and Davison: Lay epidemiology (UK)
(Brown 2006 provides a more recent contribution to popular epidemiology, and Lawlor 2003 to lay epidemiology.)

Epstein shows how AIDS activists influenced AIDS science—AZT vs. AIDSVAX
Schienke shows the possibilities for citizen surveillance of exposures

Black discusses evidence-based policy (which provides us a contrast)

(This post concludes a series laying out a sequence of basic ideas in thinking like epidemiologists, especially epidemiologists who pay attention to possible social influences on the development and unequal distribution of diseases and behaviors in populations [see first post in series and contribute to open-source curriculum http://bit.ly/EpiContribute].)

References

Black, N. (2001). “Evidence based policy: proceed with care,” BMJ 323: 275-279.
Brown, P. (1992). “Popular Epidemiology and Toxic Waste Contamination: Lay and Professional Ways of Knowing.” Journal of Health and Social Behavior 33: 267-281.
Brown, P., S. McCormick, et al. (2006). “‘A lab of our own’: Environmental causation of breast cancer and challenges to the dominant epidemiological paradigm.” Science, Technology, & Human Values 31(5): 499-536.
Davison, C., G. Davey-Smith, et al. (1991). “Lay epidemiology and the prevention paradox: The implications of coronary candidacy for health education.” Sociology of Health and Illness 13: 1-19.
Epstein, S. (1995). “The construction of lay expertise: AIDS activism and the forging of credibility in the reform of clinical trials.” Science, Technology, & Human Values 20(4): 408-437.
Lawlor, D. A., S. Frankel, et al. (2003). “Smoking and Ill Health: Does Lay Epidemiology Explain the Failure of Smoking Cessation Programs Among Deprived Populations?” American Journal of Public Health 93(2): 266-270.
Schienke, E. (2001). Bill Pease/ An original developer of scorecard.org / 2001. Troy, NY, Center for Ethics in Complex Systems.