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.

Initial notes on the Cases

From PT:
Cases: Popular epidemiology; AIDS activists influence AIDS science—AZT vs. AIDSVAX; Citizen surveillance of exposures; Lay epidemiology; Evidence-based policy (as a contrast)
Readings: Brown 1992, Brown 2006, Epstein 1995; Schienke 2001; Davison 1991, Lawlor 2003, Black 2001

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Substantive statement

Popular epidemiology- lay people detect and act on environmental hazards and diseases. Researchers can observe lay people or become an active part of the lay population. The use of popular epidemiology allows for researchers to uncover information that they would unlikely be able to uncover through traditional epidemiology. Lay people do not have to be involved in the research, but can be a significant source of information.
Summary of Readings:
The readings can be classified in many ways. One way is through researcher’s involvement in popular epidemiology.
1. The first set of readings are concerned with the impact of research on policy decisions.
Black, 2001-
Black’s article examines the potential for evidence based policy to emerge out of evidence based medicine. The argument is that clinical outcomes from research lead to changes in medicine, so why isn’t policy created from evidence that researchers find. The article states that practice policy (use of resources by practitioners), service policy (pattern of service), and government policy (organization and financial structures) cannot be created from evidence. Policy makers will have different interpretations of the evidence, come up with competing evidence, lack consensus, and have other goals. Policy would not be shaped by evidence as decisions are made upon values and are influenced by social, electoral, ethical, cultural, and economics characteristics.
-Brown, 2006
Examines the challenges involved in understanding environmental causes of breast cancer through three axes. Axis one uses an upstream down stream concept to explain that the current focus is on the treatment of breast cancer which places the researchers downstream struggling to figure out the cause. New findings, the disrupter hypotheses indicated that certain chemicals can mimic and obstruct hormone function. This finding allows for researchers to move upstream and examine the environment for a cause of breast cancer. A closer examination of environmental hazards will probably not be examined as corporations and the government does not want to spend the money on the removal of toxins. Axis two consists of current researcher’s avoidance of toxins and focus on genetics to explain breast cancer. Corporations don’t want their products to be examined. Axis three involves lay people in research to push science down a new path. This becomes a challenge as the government fears that people will gain to much control.
2. The next set of readings deals with researcher’s involvement of lay people through observations to support the idea of popular epidemiology.
-Davison, 1991
This article compares different health preventions that are used such as preventions aimed at the entire population and at high risk groups. The researchers examined how chronic illness preventions impacted the population. This article used lay epidemiology to discover that people notice illness and in individual and group explanations. The findings indicate that lay people’s explanations are dependent on the public image of the illness. They create a candidate that fits the public image of the chronic disease based on physical and genetic characteristics. This describes the population prevention as prevention paradox as it brings benefits to the population but offers little to each individual. They recognize the disease because of the intervention but do not interpret it. Solutions: Change the culture by sending messages people can understand and apply to improving their own well being like “smoking is not normal” “exercise is good” and “saturated fat is bad”
- Lawlor, 2003
Lay epidemiology describes accurate appraisal of real life circumstances that influences preventions. Smoking preventions targeting people to quit are not working for lower class people. The researchers find that poorer life changes cause people to smoke and not quit. This is because the lower class people are concerned with their immediate survival and do not focus on their future. Solution: improve conditions.
3. Popular epidemiology allows for scientist to actively participate in making political changes or environmental changes.
-Epstein, 1995
Patient groups can change health policy depending on their message, their affiliations, their goals, and ability to get messages across to other people. These groups have impacted the management of illness, attention of health professionals on certain illnesses, and research. Patient groups have brought formal change in state policy.
-Schienke, 2001
Scorecard.org is a website for public disclosure and local mapping of data from sources such as toxic release inventor, superfund sites, and clean water act. They tract recognized carcinogens. It was created out of the environmental defense. The groups that use the website consist of the general population, community activists, scientists, and large corporations. Through this website lay people can uncover environmental hazards and make changes in companies and the government.
-Brown, 1992
The love canal case-people in community seek support for claims that water in the community has caused childhood leukemia. This case opened the door for popular epidemiology because scientists do not often become political activists. The use of popular epidemiology allows for scientist to have access to hidden data, allows lay people to sway government opinion, and can cause the government to release withheld information.

-Main ideas gained from the readings-
Why researchers are interested in popular epidemiology.
People influence policy.
Different levels come together to shape ideas.
What people think is really important.

Differences between environmental and general epidemiology.

In class:
I am interested in how you would interpret popular epidemiology through your own field. In class, pick an article that helps support your own interpretation of popular epidemiology.

Example: I would choose the Davison (1991) article to explain my view of popular epidemiology as it relates to ethnic and racial characteristics of the population. I am interested in racial and ethnic characteristics and their impact on health. Findings from one study show that African American’s do not obtain proper health care because of perceptions of racism (Williams, 2004). African American’s have been known to think of Alzheimer’s as a sign from the devil (Williams, 2004). Another study finds that Older Latinos are not using medication correctly because of language barriers between themselves and their doctor. They either do not understand intervention, prevention, and treatment of illness because of different definitions and differences in language (Mutchler, 2007). Another study indicates that Mexican Americans often turn to herbal remedies to treat disease and illness (Loera, 2001). A significant lay epidemiology study finds that people tend to follow health interventions, treatments, and prevention if their doctor is of the same race as the patient. This indicates a more effective way to change people’s behaviors (Saha, 1999).
Loera, J. (2001). The use of herbal medicine by older Mexican Americans. The Journals of Gerontology, 56(11),714-718.
Mutchler, A. (2007). Language barriers surrounding medication use among older Latinos. Journal of cross cultural gerontology, 22, 101-114.
Saha, S. (1999). Patient-physician racial concordance and the perceived quality and use of health care. Archive of internal medicine 159, 997-1004.
Williams, D. (2004). Improving the health of minority elders in the new millennium. Racism and Health, 69-80.
Other studies:
Nussbaum, R., Hoover, R., Grossman, C. Nussbaum, F. (2004). Community-based participatory health survey of Hanover, WA; Downwinders: A model for citizen empowerment. Society and Natural Resources, 17, 547-559.

Residents of Hanover claimed that plant emissions were causing health problems. The government had studies conducted that denied any environmental hazard. A group of residents called the Downwinders joined together with physicians, scientists, social justice activists to find that radioactive emission did lead to an increase in thyroid cancer. The community members provided a critical role in uncovering the truth and establish the importance of popular epidemiology (JN).

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Annotated additions by students

See Trostle book on Epidemiology and Culture, esp. chaps. 6 and 7.

Leung, M. W., Yen, I.H., & Minkler, M. (2004). Community-based participatory research: a promising approach for increasing epidemiology’s relevance in the 21st century. International Journal of Epidemiology, 33 (3):499-506.
The authors state that epidemiology is at a “critical juncture” and is reflecting on whether it wants to move away from its current emphasis on individual risk factors and exposures and move back/toward its historical roots based on the sanitary movement, i.e. to improve the public's health through the understanding of disease causation. They review what they regard as some of the limitations of modern epidemiology and then make a case for the adoption of community based participatory research (CBPR). CBPR is defined as “systematic inquiry, with the participation of those affected by the issue being studied, for the purposes of education and taking action or affecting social change.” The authors view popular epidemiology as a form of CBPR because it acknowledges the historical, political, economic, cultural, and social context that must be taken into account when trying to understand and prevent disease. They note that the CBPR approach has a natural fit with environmental epidemiology but other areas within epidemiology have been slower to see its advantages. The authors provide several examples of case studies from popular epidemiology which utilized the three components of CBPR (participatory research, education, and social action): an African American community in North Carolina with the help of a university epidemiologist that tracked down the cause for its elevated rate of respiratory problems to a nearby hog farm; a collaborative study between a university epidemiologist and a community based health agency that surveyed breast and cervical cancer screening behavior among Korean women; and a partnership between an epidemiologist and a transgendered community that resulted in improved data collection and health services. A commentary by Michael Calnan following this article questions the somewhat rosy picture drawn by Leung and her colleagues. While endorsing many of the claims made for CBPR and popular epidemiology, he notes that “the evidence” indicates that few lay people wish to participate in health-related decision-making, although they do wish to be informed and consulted about the planning and provision of services. If and when they perceive a direct hazard to the community, lay people may be more motivated to participate in research, he says. There is some merit in this observation, since – as noted above - most of the studies that involved the participation of lay people have occurred in environmental epidemiology. (JC)

Watterson, A. (nd). Lay, Community and Worker ‘Epidemiology’- An Integrating Strand in Participatory Research. Retrieved from www.gcmonitor.org/article.php on December 1, 2007.

I found this article to be interesting and it addresses some to the topics discussed in the readings.

Watterson (nd) reviews the principles of “upstream” health interventions (avoidable diseases that can be prevented) vs. “downstream” medical interventions (treatment of those diseases that are preventable). These decision-making interventions are based on the precautionary principle which states that it depends not only on science and medicine, but also social, economic and political factors. Any health issues which developed from environmental factors should be assessed in terms of purpose and impact of any developments. Watterson is concerned with scientists, regulators and politicians who have not dealt with potential health problems and lists several inadequacies all which “favor capital over community and workers.” He further describes prudent decision makers using lay epidemiology as those eliminating major risk factors from public health records. They feel the proof of showing this lies with the manufacturer or the government. Although this is considered an informative method, it recognizes the limits of science as it is not controlled by science or scientific methods. The position on this is “it proves it’s safe.” Others who note evidence that a certain process or product is hazardous with clear and calculated risks will assume no risk if data is lacking or limited. These are technological optimists who take the stance of “it’s dangerous,” utilizing the scientific method and null hypothesis. The article further discusses how lay epidemiology has developed and how it connects with the technological optimists. The origins and nature of lay epidemiology are discussed along with negative epidemiology. This term (also called the “prevailing view”), refers to epidemiology which can sometimes produce “negative” results that are inconclusive and do not prove processes and materials as safe. Watterson continues by describing key terms in understanding lay epidemiology including “rapid appraisals.” This is a method to obtain community perspectives dealing with local health and social needs and convert the findings into action. These methods are designed to draw inferences, conclusions, hypotheses, or assessments in a limited period of time which are applicable to health service research. Participatory research is discussed by describing communities that are actively involved in the appraisals rather than the passive subjects of the research. He concludes with benefits of lay, worker and community-led health studies and questions how they can be introduced and supported more clearly and to a wider audience. A list of recommendations is listed at the end (SA).


The next two articles are related to one aspect of the Dec 5th popular epidemiology class which we did not discuss: evidence-based policy. In his class notes, Peter presented the Black article on evidence-based policy as a contrast to the lay and popular epi that is more grounded in community or citizen level participation. Personally, I think you can have sound policy decisions that both involve the community/social activists/non-experts AND are evidence-based. I did a bit of a search on the keywords ‘evidence-based’, ‘public health’ and policy and found many articles, most of which were NOT from the U.S. Here are two. The first is more of a guide on how decision-makers should interpret disease estimates; the second, gets at combining both quality research with community relevance.

Walker, N., Bryce, J., and Black, R. Interpreting health statistics for policymaking: the story behind the headlines. The Lancet. Vol. 369,March 17, 2007, p. 956.
This article provides guidance on how policy makers, politicians and public health officials should interpret estimates of disease burden in order to make effective decisions over complex public health issues. Data can often be misapplied in order to keep a particular health issue alive (a.k.a. keep it a funding priority) and the authors caution decision-makers to see through the spin. This may be a jab at lay epidemiology, it’s not clear, but the authors do state that their intention for the article was to “promote health skepticism of health statistics, not cynicism.” They provide guidance over how to interpret global public health estimates, which they divide into seven different levels that correspond to different relationships between an estimate and a disease or other cause of disease. For example, socioeconomic status is a broad estimate of health status which may warrant economic development program to ultimately help improve health status; but does not presuppose other lower level programs directed at reducing disease burden in the shorter term. Similarly, there is the indirect level estimate which measures the disease burden of health conditions that predispose people to other health conditions, such as the contribution of diarrhea to nutritional deficiencies that place children at higher risk of death from subsequent infections. The authors then propose a series of questions that decision-makers should ask about estimates (e.g. is the statistic a valid measure of population health? How good are the input data and estimation methods, what is the role of contextual factors? etc.). While this article is not particularly insightful, I find it helpful for guidance purposes, and please, oh please, could President Bush’s top aides take head to these guidelines to end morality-based policy! (EB)

Fielding, J, and Briss, Promoting evidence-based public health policy: can we have better evidence and more action? Health Affairs. Vol. 25(4), p. 969.
In this article, the authors promote evidence-based public health policy-making, which they say is increasingly being used in the U.S. to inform health policy decisions re: disease burden, and offer tools to facilitate ensuring intervention is evidence-based. They use the following definition for evidence-based public health: “the process of integrating science-based interventions with community preferences to improve the health of populations.” What I like about this definition is that it considers community preferences and feasibility as part of the “evidence.” The authors introduce tools for evidence-based public health. 1) health impact assessment: a collaborative and interdisciplinary process that uses a combination of procedures, methods, and tools to judge the potential effects (benefits and costs) a policy, program or project may have on the health of a population. This process values community context. It is used more in other countries compared with US. 2) Systematic review: a formal process to identify all relevant scientific studies on a topic, assess their quality, and summarize their results. Systematically linking evidence to practice and policy recommendations increases the transparency and credibility of recommendations. 3) Portfolio for assuming community fit and feasibility: involving the community in the evidence-finding process through several approaches, including participatory research (research in collaboration with those affected by the issue to increase relevance of research findings); including qualitative research findings; doing economic evaluations for cost and value; and using decision analysis models for systematically comparing options and assessing the importance of uncertainties on results. The authors summarize: “evidence-based information will not change strong ideologic support for or opposition to policy positions. However, the best available evidence can contribute to carefully vetted, balanced information that can help the open-minded to make better-informed choices.” (EB)