HHS has a strategic-plan which it updates every four years. Goal # 4 of the current plan (2010-2015) is about increasing efficiency, transparency and accountability of HHS programs.
Part of Goal # 4 reads as follows (emphasis added):
“HHS also embraces the power of Open Government, recognizing that with openness comes responsibility and accountability for results. Through Open Government, HHS is promoting transparency, participation, and collaboration—vital enablers of success in the HHS mission to improve the health and well-being of all Americans.
HHS’s Open Government efforts will break new ground in enabling the public to give feedback to HHS programs. HHS can help stakeholders contribute knowledge and experience to help it do jobs better, and HHS can support new kinds of collaborative teamwork that will deliver better results for our citizens. HHS will move forward toward new strategies, new tools, and a new culture of public participation and collaboration in its affairs.” http://www.hhs.gov/strategic-plan/goal4.html
We are currently three-quarters of the way through 2013, so one would assume that the strategic-plan begun in 2010 would, by now, be close to completion.
Yet we have been provided no evidence of HHS engaging with ME stakeholders so that our knowledge and experience can help HHS do its job better.
In addition, one can only assume that HHS’ mention of collaborative teamwork only refers to HHS and does not apply to stakeholders because again, we have no evidence of collaborative teamwork between HHS and the ME community.
The reference to “a new culture of public participation and collaboration” is interesting in that the HHS culture actually seems to be one of increasingly LIMITED public participation and collaboration, rather than MORE public participation and collaboration between HHS and the ME community. As such, it is difficult to understand how limiting public participation and collaboration leads to a more transparent, participatory and collaborate environment.
Had HHS had an engaged, and open relationship with us before now, the news on Sept 23rd 2013 from the CFSAC ListServ about the IOM study (“We are pleased to announce that the Institute of Medicine (IOM) will begin conducting a study on Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome this month…..”) might have been a nice surprise present.
Instead, coming on the heels of so many recent instances that have added to the ME community’s distrust of HHS, it is difficult to have trust and confidence that HHS has our interests at heart.
This very worthwhile post on Occupy CFS http://www.occupycfs.com/2013/09/26/trust/ has a time-line of some of HHS’ “mis-steps” this year, and more details about some of the recent instances contributing to MEcommunity’s mistrust of HHS.