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The results are the number of respondents to each question
Results of Survey regarding Patient Congress
Thanks to all of you who responded to the survey. There were 28
respondents which for
Thanksgiving week and a political issue which primarily involved US
residents I think is pretty
good. There had been some feeling that the survey was done before the
issue had been fully aired
and there is some truth to that. There was time pressure however and
almost universally when the
issue came up concerns about not delaying the conference were
expressed. Therefore while
imperfect, if the results are to have any effect the survey could not
be delayed. I also received a
number of private e-mails from significant leaders of the PD community
echoing my concerns.
This clearly is not a scientifically designed survey. But even with its
flaws the sense of the
respondents is overwhelming
Demographics
Total respondents 28
1. I am a listmember. Yes 27, NO 1
2. I am a US resident Yes 26, NO 2 .
3. I am (relationship to PD)
A. A person with Parkinson's Disease (PWP) ----- -------------19
B. A caregiver residing with a PWP
(relative)------------------ 3
C. A caregiver residing in with of a PWP
(non-relative)........... 0
D. A relative of a PWP not providing live-in care
....................5
E. A professional working with
PWP....................................... 0
F. Other interested person
........................................................0
4. I consider myself a member, or affiliated with (LIST MORE THAN 1 if
needed)
A. APDA-----------7
B. PDF--------------3
C. UPF--------------2
D. PAN-------------10
E. NPF---------------6
F. An independent support group with no national affiliation or
G. Unaffiliated with any of the
above---------------------------------- 10
5. I support the idea in principal of a Patient Congress open to all
PWP and caregivers regardless of Affiliation to develop a unified
political agenda and to set common goals and encourage cooperation
between the many PD organizations.
Strongly
Agree
Moderately
Agree
Mildly
Agree
neutral or
no opinion
mildly
disagree
moderately
disagree
Strongly
disagree
20
7
0
0
0
0
1
6. If possible I would try to attend such a Congress . YES 20
No 6
7. I believe that the EXISTING PD organizations work well and in a
coordinated way in advocating for the interests of PWP.
Strongly
Agree
Moderately
Agree
Mildly
Agree
neutral or
no opinion
mildly
disagree
moderately
disagree
Strongly
disagree
0
1
3
4
3
11
6
8, I feel it is important for the Success of a Patient Congress that the
steering committee be perceived as not supporting the agenda of a
particular organization.
Strongly
Agree
Moderately
Agree
Mildly
Agree
neutral or
no opinion
mildly
disagree
moderately
disagree
Strongly
disagree
25
1
1
1
0
0
0
9. As a group (separate from the issue of sponsorship)I feel the
individuals chosen by Jim Cordy can represent my interests in planning
the Patient Congress.
Strongly
Agree
Moderately
Agree
Mildly
Agree
neutral or
no opinion
mildly
disagree
moderately
disagree
Strongly
disagree
8
5
2
9
3
1
0
10. With NPF Hosting the committee and providing transportation, lodging
and entertainment etc,I think that the steering committee (all who have
reputations as being quite independent) will be influenced toward
supporting NPF positions and Interests:
Totally and
completely
toward
NPF
Strongly
be
influenced
toward
NPF
Mild subtle
influence
toward
NPF
positions
Will be
able to
maintain
total
independen
ce
Mildly be
influenced
against
support of
NPF
positions
Strongly
influenced
away from
NPF
positions
totally
AND
COMPLE
TELY
opposed
1
6
12
7
1
0
0
11. I believe that NPF Sponsorship without attempting co-sponsorship is
helping the PATIENT
CONGRESS attain its goals.
Strongly
Agree
Moderately
Agree
Mildly
Agree
neutral or
no opinion
mildly
disagree
moderately
disagree
Strongly
disagree
2
1
1
5
1
10
8
12. Since NPF is the strongest organization and there is such animosity
between individuals in
different groups I support the strengthening of NPF and not worrying
about the concerns of the
other groups since there is no hope of cooperation.
Strongly
Agree
Moderately
Agree
Mildly
Agree
neutral or
no opinion
mildly
disagree
moderately
disagree
Strongly
disagree
1
0
1
1
2
5
18
13.I think that the Congress would have the best chance of success if:
Continue with plans of sole sponsorship by NPF
1
Expand sponsorship to all groups- solicit funds from the PD groups and
other
sources and continue with plans to have the coordinating committee meet
in
Miami.
7
Expand sponsorship to all groups soliciting funds from the PD groups
and
other sources and have the committee meet on neutral territory.
17
Pick a new committee and start over.
1
The Congress is a Good idea that is doomed to failure
1
The Congress is a bad idea
0
14. The generous financial support of NPF for the patient congress
increases my regard and support for NPF.
Strongly
Agree
Moderately
Agree
Mildly
Agree
neutral or
no opinion
mildly
disagree
moderately
disagree
Strongly
disagree
2
3
2
7
4
6
4
--
CHARLES T. MEYER, M.D.
Middleton, WI
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