Popular epidemiology and health-based social movements
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.
Krieger: An epidemiologist argues for the "People's health."
Brown: Popular epidemiology (USA)
Markowitz and Rosner bring history to bear in discussing a current US example (Flint)
Davison: Lay epidemiology (UK)
Compare & Contrast these works from early 1990s.
(Brown 2006 provides a more recent contribution to popular epidemiology, and Lawlor 2003 to lay epidemiology. Mehdipanah looked at the perception of a group of neighborhood residents towards a large-scale urban renewal program using concept mapping)
Epstein: AIDS activists influence AIDS science—AZT vs. AIDSVAX
Schienke: Possibilities for citizen surveillance of exposures
Panofsky: The role of patient-advocacy organizations
Black discusses evidence-based policy (which provides us a contrast)
Notes and annotations from 2007 course
Common readings and cases: Brown 1992 (Popular epidemiology), Davison 1991 (Lay epidemiology)
Supplementary Reading: Black 2001, Brown 2006, Epstein 1995, Lawlor 2003, Schienke 2001
- 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.
- Krieger, N. (2011). Epidemiologic Theory Counts: Harm, Knowledge, Action, and the People's Health. In Epidemiology and the People's Health. Theory and Context. Oxford, Oxford University Press: 236-295.
- 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.
- Markowitz, G. and Rosner, D., 2016, "Citizen Scientists and the Lessons of Flint," The Millbank Quarterly,
- Mehdipanah, R., D. Malmusi, et al. (2013). "An evaluation of an urban renewal program and its effects on neighborhood resident's overall wellbeing using concept mapping" Health & Place 23: 9-17.
- Panofsky, A. (2011). "Generating sociability to drive science: Patient advocacy organizations and genetics research." Social Studies of Science 41(1): 31-57.
- Schienke, E. (2001). Bill Pease/ An original developer of scorecard.org / 2001. Troy, NY, Center for Ethics in Complex Systems.
Annotations on common readings
Annotated additions by students
(In alphabetical order by author's name with contributor's initials and date at the end.)
Lawlor, Debbie A, MPH, MB, ChB, Stephen Frankel, DM, PhD, Mary Shaw, PhD, MA, Shah Ebrahim, DM, MSc, and George Davey Smith, DSc, MD.Smoking and Ill Health: Does Lay Epidemiology Explain the Failure of Smoking Cessation Programs Among Deprived Populations? J Public Health. 2003;93:266–270
Smoking has been identified as one of the most prominent causes of morbidity and premature mortality, the social class gradient in smoking prevalence rates is said to contribute to the social class gradient in health outcomes. Lawlor and colleagues note that since the 1970S the smoking prevalence rate among men in developed countries have significantly decreased, this success generally attributed to widespread health promotion initiatives (such as counseling etc.) and the enacting of social policy measures (such as bans on smoking in public places). Concomitantly, trends in smoking prevalence rates have revealed that individuals occupying lower social classes are increasingly more likely to take up smoking and less likely to quit. In the UK, the manual–non-manual ratio in smoking prevalence increased from 1.0 in 1948 to 2.2 in 1999. The authors contend that for segments of the population whose material circumstances were less likely to represent a barrier for healthy outcomes the health risks of smoking was commensurate incentive to abandon a previously appealing activity (to the point of rendering it culturally unacceptable).
Lawlor and colleagues cite that in relation to the study of differing cultures, one inveterate anthropological school of thought assumes that inscrutable behaviors may indeed be rational within the particular cultural contexts in which they occur. The authors suggest that the infrequent application of this perspective to health-related behaviors of populations in developed countries has been a tactical error. Lawlor and colleagues postulate that persistent smoking among the most deprived members of society may represent a rational response to their life chances as informed by lay epidemiology.
Health promotion initiatives designed to reduce smoking among members of these groups may persist in being futile unless their general health and material circumstances are first improved.
Lawlor and colleagues argue that the proportionate gains in life expectancy from smoking are much less pronounced, and thus the incentives to quit quite obscured, for disadvantage groups. The authors assert that the notion of lay epidemiology influencing the likelihood of smoking is consistent with a branch of evolutionary theory increasingly used to explain health-related behaviors; complex organisms, including humans, develop strategies to maximize growth, survival, development, and reproduction. Lawlor and colleagues surmise, the hazardous environments faced by individuals from lower social classes affect their likelihood of quitting smoking as navigating such immediate tangible circumstances takes precedence. Consequently, smoking often emerges as an important pleasure and coping mechanism for these individuals.
Lawlor and colleagues posit that the current emphasis on the addictive nature of nicotine has diverted public health agenda away from tackling root causes of smoking disparity “toward adopting an easier, but clearly less effective, medical model. (Lawlor et al).” (SY)