Small Wins Matter in Advocacy Movements: Giving Voice to Patients

Abstract

In this article, the various players are delineated in a story of a contested illness and patient advocacy, played out within the corridors of federal power. It is suggested that the mistreatment and negative attitudes that health care providers and others have towards those with chronic fatigue syndrome (CFS) is possibly due to the social construction of this illness as being a "Yuppie flu" disease. Institutional factors are identified that created these norms and attributions, as well as the multiple stakeholders and constituent groups invested in exerting pressure on policy makers to effect systemic change. This article also provides examples of how the field of Community Psychology, which is fundamentally committed to/based on listening to and giving voice to patients, is broadly relevant to patient activism communities. This approach focused, over time, on epidemiological studies, the name, the case definition, and ultimately the change in CFS leadership at the Centers for Disease Control and Prevention. Keys to this "small wins" approach were coalition building, use of "oppositional experts" (professionals in the scientific community who support patient advocacy goals) to challenge federal research, and taking advantage of developing events/shifts in power. Ultimately, this approach can result in significant scientific and policy gains, and changes in medical and public perception of an illness.

New Opportunities

“…A First Person Account usually consists of an integrative Introduction and Discussion that bookends narratives from collaborating authors, thus providing a "360" window into the diverse and situated perspectives of various stakeholders engaged in community research and action. A few examples are: Brown et al (2013), Case et al (2014), Jason (2012) and Smith et al (2014).…”

Ethical and diversity challenges in ecologically sensitive systems-oriented interventions.

“…Jason (2012) suggested that the erroneous inclusion of people with primary psychiatric conditions in CFS samples would have detrimental consequences for the interpretation of epidemiologic, etiologic and treatment efficacy findings. In this dynamic process, one research finding would often influence another in often unexpected ways.…”

“…Efforts to study ecological exchanges between individuals and their social environments have been limited in number and scope (Jason & Glenwick, 2012). When the effect of environment on behavior has been studied, it has rarely been extended to the effects of behavior on environment broadly (e.g., Todd, Allen, & Javdani, 2012).…”

The use of mixed methods in studying a chronic illness

“…Yet reaching a widely accepted operationalization of this condition has been difficult to achieve (Brown, Jason, Evans, & Flores, 2013). Research has delineated a number of obstacles that have contributed to the slowing of such progress and resistance from some professionals in the healthcare community (Jason, 2012). This article seeks to illustrate the need for applying flexible, robust mixed-method strategies when investigating the nature of the illness and the experiences of the patient community.…”

“…Considerable patient and scientific activity in the ME and CFS field has focused on three areas: establishing estimates of the prevalence for the illness, addressing negative stigma towards patients due to the name of the illness, and the creation and evaluation of treatment strategies (Jason, 2012). This article will examine where research in these domains has faced limitations based on study design, and will reflect on the effects of methodological choices on the understanding of ME and CFS.…”