re: PD News: PD Registry created in UK
Linda Herman wrote:
>Wouldn't it be great if the outcomes of the growing number of treatments
for PD
>could be predicted with more certainty than "it's a matter of trial and
error" ?
NEWS:
The Agency for Healthcare Research and Quality (AHRQ) and the Kantor
Family Foundation are working to improve health care decision making by
providing patients with information based on scientific research;
supporting development of a national outcomes database to be used by
doctors and patients in determining which treatments work best for
specific diseases and conditions; and encouraging the standardization of
health outcomes data throughout the health care system. These activities
are consistent with AHRQ's mission as the lead Federal agency on quality
of care issues.
Parkinson's Disease has been identified along with Breast Cancer as a
potential demonstration case for a national outcomes data base. This
selection is based on the need for the data to inform patients as well
as providers because decisions are not clearcut and on the "activation"
of the grass roots patient groups to support and encourage its
development and use.
I have been invited to attend the next meeting of the Health Outcomes
Data Base Planning Committee on April 12th. This is a great opportunity
to take the lead in quality services for PWP. I will keep the community
informed as this project unfolds, and I will be seeking community
support for these efforts as needed.
+++++++++++++++++++++++++
Now You Have a Diagnosis: What's Next
AHRQ announced on March 22 the release of a new resource that helps patients
find and use reliable health care information to evaluate treatment options.
Now You Have a Diagnosis: What's Next is part of AHRQ's broader agenda to
promote health care quality and improve health care decisionmaking with
research and evidence. The resource was developed in partnership with the
Kanter Family Foundation. Visit http://www.ahrq.gov/consumer/diaginfo.htm
to see the publication online. To hear an audio news release, see our press
release at http://www.ahrq.gov/news/press/pr2000/kanterpr.htm and scroll to
the bottom. To order a free copy, call the AHRQ Publication Clearinghouse
at 1-800-358-9295.
Perry Cohen
