10 March 2018

Spinal Cord Injury cure community survey - Part I

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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