Archives For social-media

#IceBucketChallenge

abbywellskd —  August 8, 2014 — 1 Comment

I think by now if you are living in or around Boston you have heard of the #IceBucketChallenge to #StrikeoutALS.  The Ice Bucket Challenge was created to raise awareness for support of ALS and more specifically Pete Frates.  Pete is a former Boston College baseball captain who is battling the disease. If you are nominated to complete the challenge, you must film yourself pouring a bucket of ice water on your head, after nominating others to complete the challenge within 24 hours.  By now you have probably seen Pro Athletes, friends, family, and even politicians completing this challenge.

While watching Pete Frates’ video on his site, I learned what rewriting the end of ALS meant to him.  “Rewriting the end of ALS means raising money to get better research for treatment and ultimately finding a cure.”  So if you head over to karmadata, we can dig into the research part of ALS.  You are able to see below that the number of Industry Sponsored ALS trials are declining.  As Pete said, the way to a cure is through research.  We need to raise the amount of research that is being done.

ALS TrialsIf you head over to Sponsor Finder and search for ALS Trials, you will see that there are only 8 companies actively conducting ALS clinical trials.

ALS

 

Lastly, this data card below shows government funding.  John Hopkins University being the top organization who grants money to ALS.

ALS_Grant Money

 

So what does all this mean?  This challenge is to create awareness for ALS and I believe it is working.  When I log in to facebook, it’s the first thing I see and it fills my news feed from top to bottom.  By creating awareness, we are able to become more knowledgable on ALS and more likely to donate to the cause, which will hopefully result in more research.  With all of the visualizations on funding and number of companies/trials, you can see that ALS may not be something people are too aware of.  The Challenge will definitely not cure anything right away, but it is a big step in the right direction!

A couple of us here at karmadata have already donated to ALS and completed the Ice Bucket Challenge, even our CEO Sean Power who completed it last night!  We urge you to visit petefrates.com and donate!  You can also check out the sweet Frate Train gear at petefrates.storenvy.com

 

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People are inherently social.  Facebook, Twitter, Pinterest, LinkedIn, Spotify, FourSquare.  The social media list goes on.  And while many people avoid social media for reasons ranging from privacy concerns (more on this later) to not wanting to know what everyone is doing 24 hours a day (everyone has a friend or two who are social media spammers), the overall popularity of these sites indicates an almost unquenchable thirst for socializing, sharing, collaborating, and interacting.

What Facebook is to friends and photos, LinkedIn is to colleagues and work connections, and Spotify is to music fans and music, karmadata is to data consumers and data visualizations.  So even while we are heads down, programming, and buried in code, there is always an overriding sentiment in the back of our minds: we are building something social, collaborative, and most importantly, fun.

Another form of online interaction is blogging (like this one), and making data visualizations into mini-blog posts is the inspiration behind where we are heading with our datacard design.  The idea is that each datacard tests or validates a theory, and the user can then publish their insights on karmadata.  We are trying to make datacard creation as personalized, interactive, and fun as possible.  That means creating custom titles, descriptions, x and y-axis labels, and anything else that our user community can come up with.  We do our best to provide users with the basics, but our vision is that our users will take the value of the datacards to another level.  That means that an auto-generated y-axis of “# of Clinical Trials” can be quickly altered to “# of Phase III Leukemia Trials”.  Editing filters, seeing how it affects the data, customizing the metadata.  All of this should be fun.

That’s the fun part.  The social part is sharing that mini-blog with your friends and colleagues, engaging in comments back and forth, and leveraging the expertise of each other to answer questions and solve problems.  Or it can be finding a datacard that someone else has already created that answers the same question that you have.  This sharing and collaboration is the first half of our namesake.  The idea is that you get out of the community what you put into it.  Sharing is good karma.

Now much like the person who wants to “stay off the grid”, we recognize that many data consumers will not want to share because they do not want others seeing what they are interested in.  Many pharma, in particular, have a paranoia about competitors knowing what they are up to, and in many cases these concerns are valid.  But since we want everyone to share, our philosophy is that if you don’t want to share, then you have to pay to avoid sharing.  In such as case, a company can pay for karmadata Plus to unlock functionality for everyone at their company to remain anonymous and closed off from the rest of the community (Plus users also receive other benefits like data download and upload of internal data but that’s a story for another day).

In any case, we ask you to share your ideas with us about how to make the site more fun and social (because that’s good karma).