Am J Community Psychol. 2011 Aug 20. [Epub ahead of print]
Small Wins Matter in Advocacy Movements: Giving Voice to Patients.
Jason LA.
SourceDePaul University, Chicago, IL, USA, ljason@depaul.edu.
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.
PMID:21858612[PubMed - as supplied by publisher]
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