Jason Article: Small Wins Matter in Advocacy Movements: Giving Voice to Patients.

[CBS]

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

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!

 

[Enid]

Very refreshing to read - thanks very much for posting CBS.

 

[WillowJ]

Jason is a wise man.

Thanks for this and for your commentary, CBS.

 

[LaurelW]

:victory:Leonard Jason is my hero!

 

[Dolphin]

Link to free full text

Free full text at:http://www.springerlink.com/content/c726m71k010685r8/fulltext.html or http://www.springerlink.com/content/c726m71k010685r8/

 

[RustyJ]

Nevertheless, at a critical time, these organizations focused their activities, worked together, and were effective in changing the CFS leadership at the CDC. We might never know fully what led to these changes.

This paper is pretty shallow and doesn't seem to say very much except that there was increased advocacy. Duh.

There was only one trigger: the WPI finding. Jason has all but ignored this. He has ignored also the most recent changes in the CAA and the major falling out between CAA and many patients, as well as the shift away from patient advocacy.

The changes within the CDC & co have amounted to naught. Mangan has proven himself to be a public relations appointment aimed at quelling the unrest. Many of the problems plaguing the CDC's attitude to patients has not altered, and in fact seem even more entrenched.

Funding has not increased, and in fact may have decreased.

Again, one of the most significant events of the year, the new definition was not due to patient advocacy, but the voluntary effort of researchers.

Advocacy has been galvanized but it has been placated with frenetic public relations efforts and not real change.

 

[WillowJ]

Free full text at:http://www.springerlink.com/content/c726m71k010685r8/fulltext.html or http://www.springerlink.com/content/c726m71k010685r8/

thanks for that :Retro smile:

One of the primary focuses of patient advocacy movements is to give a voice to patients

Indeed

Johnson (1996) and others suggest that some early scientific research, which strongly emphasized psychogenic factors at the exclusion of other more biological causal factors, has limited the exploration of the pathophysiology of CFS.

A number of prominent scientists within the US and Europe initially described CFS as primarily psychologically based and opposed characterizing CFS as a physiological illness. For example, Abbey and Garfinkel (1991) wrote: chronic fatigue syndrome will meet the same fate as neurasthenia-a decline in social value as it is demonstrated that the majority of its sufferers are experiencing primary psychiatric disorders or psychophysiological reactions and that the disorder is often a culturally sanctioned form of illness behavior (p. 1638).

Richman and Jason (2001) argued that the social construction of CFS as a psychogenic illness of neurotic women, similar to earlier depictions of multiple sclerosis, may have contributed to the negative attitudes that health care providers and others have towards those with this syndrome.