I didn't see this posted yet. Mods - feel free to delete this thread if it is already been put up.
Small Wins Matter in Advocacy Movements: Giving Voice to Patients.
Jason LA.
DePaul University, Chicago, IL, USA, ljason@depaul.edu.
Am J Community Psychol. 2011 Aug 20. [Epub ahead of print]Abstract
Abstract
Jason does a nice job of outlining many of the elements leading to change in the last few years (I know that sometimes its hard to see the change but I think it is there - while not nearly fast enough).
I found this take on patient advocacy refreshing and more than a bit ironic given all that Simon Wessely has been up to in the past few weeks. Both Jason and Wessely are trained in research on the psychological aspects of health (Jason is a psychologist and Wessely is a psychiatrist) but to Wessely, his focus has morphed into obsession with self and an inability to see the big picture because of the alleged actions a a few (delusions of grandeur mixed with rage over a lack of appreciation and a persecution complex?). Jason sees the whole. I strongly suspect that Wessely will only part of the conversation for as long as he can keep the spotlight on himself. Jason, by contrast, will have a lasting impact. He is an inspiration. Dr. Jason, Thank You!
Small Wins Matter in Advocacy Movements: Giving Voice to Patients.
Jason LA.
DePaul University, Chicago, IL, USA, ljason@depaul.edu.
Am J Community Psychol. 2011 Aug 20. [Epub ahead of print]Abstract
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.
Jason does a nice job of outlining many of the elements leading to change in the last few years (I know that sometimes its hard to see the change but I think it is there - while not nearly fast enough).
I found this take on patient advocacy refreshing and more than a bit ironic given all that Simon Wessely has been up to in the past few weeks. Both Jason and Wessely are trained in research on the psychological aspects of health (Jason is a psychologist and Wessely is a psychiatrist) but to Wessely, his focus has morphed into obsession with self and an inability to see the big picture because of the alleged actions a a few (delusions of grandeur mixed with rage over a lack of appreciation and a persecution complex?). Jason sees the whole. I strongly suspect that Wessely will only part of the conversation for as long as he can keep the spotlight on himself. Jason, by contrast, will have a lasting impact. He is an inspiration. Dr. Jason, Thank You!