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.
Guidelines for annotations
Notes and annotations from 2007 course
Initial notes from PT
Common readings and cases: Brown 1992 (Popular epidemiology), Davison 1991 (Lay epidemiology)
Supplementary Reading: Black 2001, Brown 2006, Epstein 1995, Lawlor 2003, Schienke 2001
Brown: Popular epidemiology (USA)
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.)
Epstein: AIDS activists influence AIDS science—AZT vs. AIDSVAX
Schienke: Possibilities for citizen surveillance of exposures
Black discusses evidence-based policy (which provides us a contrast)
Annotations on common readings
Popular Epidemiology, or
The Clashing Standards of the Laity and Epidemiologists
This week’s readings focus on popular epidemiology, or the conversation between trained epidemiologists and others who care about health and disease. The two common readings seem to share a theme of ‘the laity is going to think what they want anyway’ but the authors come to different conclusions about that belief.
Brown (1992) uses the example of Woburn to highlight the issues between popular epidemiology and professional epidemiology. The differences between the two camps include competing definitions of data quality, methods of analysis, accepted methods of measurement, statistical significance, and relations between science and public policy (p. 267). The focus of the article was largely on the debate on study design and standards of proof.
Brown lays out a model of how popular epidemiology generally works (p. 269-270) which is helpful for showing the competing points of view. Brown writes: “While epidemiologists admit to the uncertainties of their work, their usual solution is to err on the side of rejecting environmental causation, whereas community residents make the opposite choice” (p.271). This point explains the heart of the disagreement. As does: “Epidemiologists…would prefer to claim falsely that an association between variables does not exist when it does that to claim an association when there is none” (p.274). Generally, but certainly in cases like that of Woburn, lay people concerned would rather err on the side of caution.
Brown finds that popular epidemiology was successful in Woburn. I appreciated that he did reference that what the popular epidemiology team there was trying to do was very similar to the cases that began the discipline of epidemiology, but he is quick to note that epidemiology has come much farther since the days of John Snow (p.276). Brown notes that lay involvement can serve to advance science.
Davison, Davey Smith, and Frankel (1991) use the idea of candidacy for heart attacks (as in “he looks like a candidate for a heart attack”) within British culture to explore how the public interprets epidemiological information. This work centers around the study of “health beliefs” or the “range of explanatory models which people employ to account for illness and poor health” (6). These health beliefs held by the laity, in terms of coronoary heart disease, are based on unscientific criteria, and Davison et al do not seem pleased to find that people find those criteria satisfactory.
Davison et al bring up Rose’s “Prevention Paradox” which, it seems, is not much of a paradox to the lay people. Most preventative measures (exercising, eating right) guard against a host of possible ailments and rarely cause detrimental side effects, but Davison et al see this as “broadcasting of propaganda based on half truth, simplification, and distortion” (17).
The supplemental reading that I think ties this all together nicely is Lawlor et al (2003) where you see a group of epidemiologists stumped as to why a certain group of people would continue detrimental behaviors (smoking, in this case). What the piece points out is the importance of epidemiologists seeking answers within lay communities and stepping out of the bubble that has been built around the discipline. Lawlor’s piece attempts to explain why poor people still smoke even though its universally recognized as unhealthful. The answer, the authors suggest, is that if life is already dangerous, or unfulfilling, as life in poverty might be, that poor people have less of an incentive to quit. I think that this is a good example of epidemiologists trying to look at an issue from the lay perspective, and it serving to advance the science. (MC '09)
Annotated additions by students
Popular Epidemiology and Health-Based Social Movements
Davison, Davey-Smith and Frankel
Although written in 1991, this article centers on a current debate; the extent to which obesity as a risk fctor of chronic diseases and early mortality should be addressed at the individual versus population level. The authors are from England and repeatedly reference the cultural and social context which puts the onus on the individual for changing one’s behavior. This framework is relevant for the U.S. also. In particular, the notion of ‘choosing health’ is laden with responsibility and stigma, with overweight and obese individuals evidently having failed to choose the right behavior through lack of intelligence or self-restraint. The label and concept of a candidate for a particular outcome is explored at length, with examples serving as retrospective explanations, predictions, and self-assessments. In the case of the latter, assessments are based on the following criteria: physical appearance, social information and personal information. Thus, overweight and obese individuals in the U.S. are stigmatized and held responsible for their own behavior/choices and associated outcomes, as the expense of environmental and policy changes that could support population-level shifts.
Brown
This article focused on the role played by lay people and activists in employing an epidemiological approach to emergent health issues. Interestingly, the article demarcates professionals from lay people, which may be a false distinction, especially in an area such as Eastern MA where there is a concentration of overeducated individuals. Thus, the ‘local community activist’ may well be an accomplished researcher or professional who is able to apply their skills, expertise and confidence in a cross-disciplinary fashion. In my experience working in Greater Boston, this concentration of talent and expertise serves to strengthen communities and foster civic engagement. This article outlines how such a process empowered and enabled community members to address leukemia in Woburn, through establishing and leveraging relationships with researchers and politicians. Often, those within the ‘establishment’ do need a push from individuals with a vested stake in a health issue, and who are not constrained by the IRB or government protocols. It is often amazing what can be accomplished with little to no resources, and without acknowledged expertise. The role of ACT-UP in making AIDS visible and a priority provides an excellent example.
Lawlor et al
Similar to other readings this week, this article addresses the importance of addressing individual level behaviors and practices, along with societal infrastructure and policy change. The focus here is on the persisting social gradient of smoking prevalence, with poorer individuals continuing to take up and sustain smoking in the face of overwhelming medical evidence of ill-effects, social stigmatization and policy restrictions on permissible places to smoke. The authors suggest that it may actually be rational for poorer citizens to persist in smoking, as they have no expectation of improving their health or extending their life through cessation. They suggest that a focus on economic policies, such as income or housing quality may better target and improve the day to day conditions of the poor, thereby giving them incentive to quit smoking as part of an overall improved quality of life.
Added by Amy Helburn December 6th
