Ninety-nine
members of the Spinal Cord Injury community took their time to answer this
year’s survey. While not a huge number, it is similar in size to 2011, and I
always must remind myself that we are not a huge community.
After I
finish writing part II, I will make all the data available, but I am going to
spend a few minutes looking at what I consider to be the most interesting
results. You may see something that I missed, so please feel free to write to
me and point it out.
|
Do you believe that a cure
for SCI is necessary so that people living with SCI can have an improved
quality of life and not have to suffer secondary complications?
|
|
|
YES
|
93
|
|
NO
|
3
|
|
Undecided
|
2
|
|
|
98
|
People aren’t
fooling themselves. Even with all the progress science has made in reducing
secondary complications and improving quality of life for those of us in
chairs, over 90% of respondents believe that CURE is a necessity to answering these
issues.
|
Rate the following reasons
that are often given as barriers in the way of a cure for SCI.
|
Important>>>>>less
important
|
||||
|
1
|
2
|
3
|
4
|
5
|
|
|
The science necessary to
cure paralysis.
|
41
|
16
|
13
|
5
|
8
|
|
Lack of government
funding.
|
58
|
11
|
6
|
4
|
10
|
|
Lack of non-governmental
funding.
|
42
|
17
|
11
|
10
|
8
|
|
Lack of collaboration
amongst scientists.
|
33
|
17
|
21
|
8
|
7
|
|
Lack of activity in the
SCI community.
|
20
|
19
|
22
|
11
|
12
|
This issue of
money vs science as the main barrier to cure was overall rather evenly split,
but for those who picked money as a problem over science as the biggest
barrier, money did win out. What do you think?
Personally, I
don’t believe that either of those are the main problem. First, don’t get me
wrong; I don’t think there is the science out there, yet, to cure paralysis, but
I’m not sure if even more money would improve that at the moment. I don’t have
the exact answer myself, but one thing that did shock me was that “lack of
activity in the SCI community” didn’t rank higher. I’ve always felt that this
riddle is as much up to us as it is the scientists.
|
On a
scale of 1 to 10, rate how educated you feel you are about the science behind
SCI and SCI cure.
|
|
|
Not at all knowledgeable
1~2
|
12
|
|
3~4
|
13
|
|
5~6
|
22
|
|
7~8
|
38
|
|
Very knowledgeable
9~10
|
8
|
|
Total
|
93
|
|
How do you get most of
your information about SCI cure?
|
|
|
Online forums
|
76
|
|
Blogs
|
45
|
|
Magazines/Newspapers
(online or paper including scientific journals)
|
42
|
|
Vlogs/podcasts
|
16
|
|
books
|
11
|
Of course,
those who did the survey are the most interested in cure and they would be the
ones who are the most educated on cure, but looked at simply, even in this
group, “not at all knowledgeable” half and the “very knowledgeable half” are
quite similar.
I know that
if we’re going to be involved as a community in cure, we’ll have to improve the
“knowledgeable” rating, including my own.
And how do
most people study; well, it looks like TOGETHER is the big answer. Online
forums, where people share information and materials, is the place where we
have to reach if we’re going to have an impact.
Which leads
me to the next part; people’s reaction to www.CareCure.com.
|
Do you know about the
online Cure Forum at www.CareCure.org
|
|
|
YES
|
73
|
|
NO
|
27
|
|
Total
|
100
|
|
Do you ever visit the
online Care Forum at www.CareCure.org?
|
|
|
YES
|
68
|
|
NO
|
5
|
|
Total
|
73
|
Even with
this many people responding that they know about CareCure, I was still shocked
that it wasn’t higher and that basically on 68% used it as a resource.
|
How would you describe
your participation on the Cure Forum at www.CareCure.org?
|
|
|
I only read the posts
|
25
|
|
I read the posts but
rarely write posts
|
23
|
|
I read the posts and
sometimes write posts
|
13
|
|
I read the posts and
actively write posts.
|
6
|
|
total
|
67
|
And that only
19 people sometimes or actively write posts (especially since most of the hits
to this survey were from CareCure) really shocked me.
So, even
while people consider themselves rather knowledgeable and most of the study
comes from online forums, people are not being engaged; they’re reading and
learning, but maybe with no place to put this knowledge.
|
On a scale of 1 to 10,
how would you rate your experience with the Cure Forum?
|
|
|
1
|
1
|
|
4
|
3
|
|
5
|
8
|
|
6
|
6
|
|
7
|
9
|
|
8
|
16
|
|
9
|
10
|
|
10
|
11
|
|
total
|
64
|
|
How would you describe
the current amount of information and activity on the Cure Forum?
|
|
|
Activity has dropped off
significantly in the past two years.
|
16
|
|
Activity has dropped off
somewhat in the past two years.
|
16
|
|
Activity has not
markedly changed in the past two years.
|
22
|
|
Activity has somewhat
increased in the past two years.
|
5
|
|
Activity has
significantly increased in the past two years.
|
2
|
|
total
|
61
|
People are
giving CareCure high grades for their experience on the site, but the majority
believe that activity on the site has dropped.
So how do we
engage people? How do people want to be involved? That will be the focus of
part II. Please stay tuned.
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