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Social Change in Public Health: Taking Stock for Future Efficiencies The past 30 years have seen gradual, yet glaring transformations in the social thinking of major public health maladies to strike our times. The huge paradigm shifts that have taken place in the sociological attitudes towards breast cancer are a classic case of how health social movements can cause these undercurrents of change. In this paper, I describe the literature across three realms: sociology, mass communications, and diffusion of innovations theory, that have attempted to chronicle this shift in thinking. Upon noting the salience in the present body of scholarly literature and clarifying opportunities for further exploration it offers, I argue for increased attention to this area from public health scientists. To be able to guide the agenda setting and framing of future public health conundrums for maximum impact, it is imperative that our perspective be empowered by a strong understanding of the dynamics of social change.
| Santosh Vijaykumar, MA
Breast cancer funding
increased from $90 million in 1990 to $600 million in 1999. 1 Researchers noted a 20-fold increase in breast cancer coverage after singer Kylie Minogue’s breast cancer illness became known; screening bookings rose by 40% in two weeks of publicity. 2 There are innumerable documented cases of breast cancer movements, awareness campaigns, and health fairs in the 1990’s as compared to the 1970’s.
In what seems like a fairly successful endeavor for breast cancer activists, advocates and survivors, it is easy to forget that the above transitions are not individual events in their own right. Rather, they are set in the backdrop of an increasingly bustling social fabric where public discussions and debates on screening procedures and treatment options are more rigorous than rare. What has evolved is not only medical technology offering more choices to patients, but also the patients’ ability to discern between the choices they have, their awareness of the right to choose, and the channels of communication between patients, physicians, and their families. Given this context, it is critical for public health
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scientists to understand the sociological undercurrents, which engineer these shifts; these undercurrents are the forces that eventually impact the longevity of health movements in the social sphere. On detailed examination, scientific effort directed at understanding this area can be categorized into three fields of study: health social movements, mass communications, and diffusion of innovations theory. Social Movements: Much of what has been studied about as regards the drifts in the social perception of breast cancer has been studied through the grid of Health Social Movements (HSMs). Arriving from a sociological perspective, HSMs observe three kinds of social movements related to health: a) health access movements, b) constituency based health movements, and c) embodied health movements (EHMs). 3 Breast cancer movements have been categorized into EBMs, wherein the movement addresses ‘disease, disability, or illness experience by challenging science on etiology, diagnosis, treatment and prevention’. It is implied then that this process of ‘challenging science’ is characterized by a multi-faceted, multi-layered sociological twist that sets off a series of ripple effects leading to change in action and perception. On the one
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| COMMENTARIES | hand, there is the dynamic of revolt that has so far been euphemistically mentioned in current literature as ‘opposition’. It is understood in the context of this disease that individual or group stakeholders (to be addressed henceforth as ‘activists’) who are directly/indirectly affected by scientific research about breast cancer, engineer this ‘opposition’. However, it is equally possible that stakeholders and scientists might collaborate rather than confront. Another dimension to this process is that the new opposition sparks off a tone for fresh research ideas and possibly, an addition to the existing body of scientific knowledge. The contents of the debate might range from illness experiences that are out of sync with research findings to date, to ethical issues among present preventive and clinical practices, to a need for new initiatives for addressing present needs. Studies extracted from the social movements literature explain how the concept of ‘collective illness identities’ contributes to the formation of activist groups during an HSM. The concept of collective identities is especially relevant in this context because the very people afflicted by breast cancer have conducted much of the activism and social movements surrounding this disease. Though much thought has been attributed to the different levels of involvement and change these identities deal with, this is also an important reflection of the role of survivors and
patients in breast cancer movements. Klawiter (1999) offers an extensive elucidation of how differently breast cancer is incorporated into the activism and agendas of three breast cancer movements in the San Francisco Bay Area. 4 This brings us to the issue of communication content – what are the constructions of breast cancer used by breast cancer activists to attract attention and action to the core issue of their activism? How do activists use specific cultural nuances, personal circumstances and national economics to garner support for their cause? These questions are addressed by studies that explore the concept of ‘framing’ in social health movements- a concept that addresses the use of specific interpretive schema to mobilize collective action. In a study that details the use of frames as a cultural resource in breast cancer funding activism, Kolker (2004) explains the impact of three prominent culturally resonant frames that characterized the great leap in breast cancer funding from $89 million in 1991 to $433 million in 1993.5 In lobbying campaigns that were mainly spearheaded by the National Breast Cancer Coalition (NBCC), Kolker notes how the rejuvenated “claimsmaking” was rooted in: 1) portraying breast cancer as a future epidemic, 2) positioning breast cancer as a problem of gender equity, and 3) breast cancer as a major cause of family erosion. It is not known yet, however, if the giant leap in funding resulted in such frames transforming into an agenda
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for public discussion in the latter years. Interestingly, we can also observe a parallel between the frames used above and the constructions of breast cancer prevalent during that time period. Petersen (1994) uses his exposition of historical constructions of breast cancer to highlight paradigmatic shifts in the public perception of this disease. He observes that these constructions follow advances in the medical profession of their times. In line with this, Petersen notes how the understanding of breast cancer shifted from being a localized malady (in the 1970’s when the Halstead mastectomies first gained prominence) to a ‘potentially systemic disease and (one causing) personal trauma’, with the evolution of bacteriological models of education and treatment.6
Media representations of Breast Cancer: Most studies that have examined changes in and depictions of breast cancer perception in the media have done so by conducting classic content analyses of breast cancer portrayal in women’s magazines, and in national newspapers. Though it has been observed that there has been a surge of breast cancer coverage in the print media, there are two observations that we must make in this account: 1) these studies focus primarily on attributes of the content more than its sociological context, and 2) the burst of television in the national mindset has not been adequately studied in that none of these content
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| COMMENTARIES | analyses attempt at examining breast cancer coverage by prominent television channels. Existing literature that traces content characteristics in breast cancer coverage in US print media, paints a rather grim picture about the quality of coverage. Magazine articles written between 19871995 have contributed to women’s misunderstanding of true risk of breast cancer by inadequate explanations about risk factors and distorted facts of age of diagnosis.7 Likewise, other stories in popular U.S. magazines misinform their audiences about the age distribution of the disease, thereby causing young women to overestimate risk and experience unwarranted fear.8 A study conducted on newspaper coverage following NIH’s landmark decisions against mammography screening showed how newspapers portrayed mammography as something that women ought to do.9 What has also come in for scholarly scrutiny is the portrayal of different characters involved in the disease. Women have traditionally been portrayed, as being ‘worried about their health’, and most feared of ‘their’ diseases (note the gender-based slant to breast cancer here), while their bodies are also held as a cause for breast cancer. The attribution of ‘responsibility’ to woman in disease diagnosis and management has been insightfully captured in an examination of breast cancer in popular women’s magazines from 1913-1996.10 It has been
observed herein, that women’s magazines have held women personally responsible in three different disease situations: diagnosis, preventing risk, and survival, through different cases of narration. Alternately, doctors are mostly portrayed as moral truth-seekers, infused with rationality and intelligence’. 11 Robertson (2000) studied the underpinnings of women’s accounts of risks for breast cancer and found that them to have embodied a ‘political rationality’, which reconstitutes them as independent and responsible for their health status. 12 The academic attention directed towards breast cancer coverage in the mass media is in itself ample testimony to its role in shaping public opinions, creating awareness, and initiating debate – all elements necessary for it to be a catalyst of social change. However, the body of knowledge generated in this area falls short on some major aspects, one of them being addressing the racial disparities in breast cancer. More importantly, while these studies have noted specific characteristics of content in different time periods, ranging from a few years to a decade to half a century, no attempt has so far been made to track these changes over a period of time. Extending this, it must be said that scholarly literature is inadequate with an analysis of how underlying currents of social change have reflected on newspaper coverage and vice versa.
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Diffusion of Innovations As is evident from the above briefs, the core of breast cancer movements to date has been the germination of a new idea, belief, or experience, followed by its visceral spread across single or multiple groups in a population. The main theoretical construct that addresses this process is the Diffusion of Innovation theory new that been widely employed to trace the flow and nature of acceptance of an innovation. In our context of social change, scholars have extensively studied the diffusions of innovations in social movements. Noting the difference between diffusion as mimicry and diffusion as social learning, Strang and Soule (1998) find that (in a social movement) experts cannot be distinguished so easily from adopters, as activists move seamlessly across the two roles. Of equal interest must be that the mass media outlets have been the strongest external sources in classic diffusion research. ‘The mass media plays a crucial role in amplifying and editing the diffusion of collective action, and much protest today is organized around that fact’.13 The DOI approach has been widely implemented in national and international public health programs especially with HIV/AIDS and Family Planning because it helps to provide a closer understanding of the innumerable psychosocial and cultural factors that dictate behavior change. In an evaluation study conducted on the use of DOI to reach
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| COMMENTARIES | culturally unique populations in San Francisco and Bangkok, the researchers concluded it would be better to use outreach workers who are either homophilous with intended audience or are opinion leaders in the community.14 The underlying implication here is the use of opinion leaders to strategically disseminate the message and garner support for a social movement in their roles as change agents. There is a dearth of scholarly literature that examines the emergence and spread of a health social movement. This is surprising especially since the breast cancer movement has gained noticeable momentum in the US in the past century, what with several change agents (survivors, celebrities, media, and lobbyists) involved in the same.
Social Change in Global Health Domains
Reproductive Health: Why has the United States been unable to curb the ballooning of young pregnancies as compared to other smaller European countries? Why is it so challenging to implement the one-family-one-child policy in India? 15
Obesity: Why has the obesity epidemic not experienced a social movement similarly successful to that of breast cancer? What are the sociological dynamics that have challenged our addiction to unhealthy eating habits? 16
Euthanasia: Despite tremendous technological, medical, and intellectual advances in the last century, why has the ambivalence as regards euthanasia remained unchanged from 19472003? 17
Cervical Cancer: Why do nonprofit agencies and academic researchers pose challenges to health systems in handling this form of deadly cancer in developing countries? 18
How have wars, transitions, interactions among emerging biomedicine, rates of disease outcomes, viral evolution, and the social reactions to these impacted the skin of the AIDS epidemic in the past 25 years? How have social movements (including advocacy efforts) contributed to shaping the epidemic towards its present form? 19
CONCLUSIONS & RECOMMENDATIONS: Our speedy zeal to innovate and implement public health interventions has the potential to efface from our overall strategy creation considerations of cumulative social ramifications caused by our programs cause from our. We must thus be continuously reminded that any individual program or intervention can only cause maximum impact when its strengths are strategically synergized with those of other programs/interventions.
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Simply put, it is upon us to create these intervention synergies in a way that they direct social thinking about the specific issue in a manner that would eventually lead to greater awareness and behavior change. Without sight of the underlying social phenomena that drive our disease communication efforts in any direction, we are parachuting with no idea about the wind. Having said that, what are specific research areas that can be focused on to drive scholarly curiosity towards social change? This tripartite analyses of existing scholarly work conducted on breast cancer movements reflects critical gaps in scientific research, that urgently need to be filled to strengthen our understanding of social change in the breast cancer milieu over the past century. Such an historical understanding is necessary for public health scientists to guide current breast cancer discourse and more importantly, to predict and refine future movements so as to make maximum impact. Firstly the social movements literature do delve into the characteristics and nature of health social movements in great depth. However, these studies are too broad in scope and are hence limited by their ability to capture specific sociological and cultural nuances that were integral to breast cancer movements. A scholarly autopsy of these different shades pitted on critical time points in the breast cancer movement will help us map the etiology of social change that is embedded within this movement.
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| COMMENTARIES | Secondly, present knowledge of breast cancer coverage in the U.S. mass media is restricted to content analyses of articles that appeared in women’s magazines and national newspapers. Though a number of these retrospective studies record different attributes of content, there has been no study that has tracked content changes over a period of time that corresponds with the breast cancer movement. Finally, the vast expanse of the diffusion of innovations model has not yet encapsulated the areas of health social movements and breast cancer, leaving the model’s capabilities largely underutilized. These capabilities include identifying and tracing the path of social change related to breast cancer movements, measuring the rate of spread of change, and most importantly mapping the path of a message of change.
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27. Klawiter, M. (2004). Breast cancer in two regimes: the impact of social movements on illness experience. Sociology of Health & Illness, 26(6), 845-74. 28. Travis, C., Compton, J. (2001). Feminism and health in the decade of behavior. Psychology of Women Quarterly, 25. 312323. 29. Lugton, J. (1997). The nature of social support as experienced by women treated for breast cancer. Journal of Advanced Nursing, 25. 1184-91.
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