Science 2.0 Catching Up?

Posted on January 16, 2012 by askmanny

I have apologized so many times about my absence from this blog, that I figured I’d stop doing it and just post whenever I can and… so be it!

A friend of mine shared a NY Times article tonight with a group of us that brought me out of my blogging withdrawal, a piece titled “Cracking Open the Scientific Process” that questions the process of peer-reviews in medicine and scientific journals.

This article is more than just on to something: it’s in line with the future… mash-ups, crowdsourcing, social sharing, web 2.0… call it what you want… As a matter of fact, in many areas this is not the future but rather the way the present is lived and breathed. But the world of scientific research has been slow to adopt Web 2.0 trends.

The truth is information wants to be free and be shared and it will be! A few years ago who would have given ANY credibility to what a bunch of patients living with a chronic disease had to say about the disease they live with 24/7. Today, the Diabetes Online Community is a force that influences legislation, research, product development, you name it…

Researchers that are closed and not willing to share in their approach may be able to “run” but they can’t hide. Funders are realizing more and more that this kind of “my precious!” type of research has produced very slow progress in many fronts. They are seeing promising trends like the partnership between Innocentive and JDRF around a $100,000 challenge for innovative ways to approach the discovery and development of a glucose-responsive insulin drug as a means to treat insulin-dependent diabetes…

Another great example of this trend can be seen in Boston-based nonprofit T1D Exchange. They developed Glu, a new portal for people with type 1 diabetes, as a means to communicate with the community and to advance diabetes research through surveys and studies. You can read more about this initiative in this recent interview with Jen Block, their Clinical Content Manager.

Could a cure for type 1 emerge from the information voluntarily-shared by people living with type 1 diabetes? Perhaps. Could we as a community (of patients and researchers) learn more from it? You bet! I know we have done so through TuDiabetes and TuAnalyze, with a universe of participants of just over 3,000 people touched by diabetes. Imagine the potential!

So, the flood-gates of information sharing in the scientific world are opening. Who is ready for what is coming?

Disclaimer: Diabetes Hands Foundation (where I serve as President) has collaborated with T1D Exchange in the development of Glu.

Networked: How Much is Too Much?

Posted on June 18, 2011 by askmanny

Update: I was prompted to revisit this post, originally written in June of 2007, after I read a great entry written by Dr. Casado, titled “El Que Segmenta, Gana” (The person who segments, wins).

Also relevant to this topic, the post from earlier in 2011 “10 ways to clean up your Twitter feed“.

Enjoy…

(Design: Mat Giordano)

“Each of us will belong to between 12 and 24 online and/or mobile communities by 2010, and our power to do good things and disrupt old industries will be unique and radiant.” – David Silver, Smart Start-Ups

Reading this phrase recently made me wonder how many communities am I currently a part of? This was the tally I arrived at:

~~Propeller: the Student Portal I manage at Full Sail.~~ (2011 Update: no longer working there)
~~Last.FM: to share the music I listen, so can find… more new music to listen~~ (2011 Update: left it in 2009, when Last.FM sold out)
Twitter: to share what I do in a micro-blog fashion (2011 Update: I share but I also listen a lot… it’s a great tool to stay on top of topics you care about by NOT following a ton of people)
~~Flickr: where I share my photos and comment on friends’ photos~~ (2011 Update: still use it but gradually less and less)
YouTube: I mean, who doesn’t know YouTube? (2011 Update: fairly active member, mostly contributing content and featuring other people’s content)
LinkedIn: for business purposes. (2011 Update: one of the top networking resources I use)
~~Del.icio.us: to share interesting web sites I run into~~ (2011 Update: very rarely use it. Have found Evernote to be just as useful)
~~Digg: allows me to “vote” on links, though at times it gets a little annoying~~ (2011 Update: I still have an account or two, but I almost never go there)
~~MySpace: to listen to music, once in a while~~ (2011 Update: … rings a bell…)
Facebook: starting to warm up to it, but really not something I am on constantly (2011 Update: I have warmed up to it… and use it daily, so do nearly 700 million people around the world)
TuDiabetes: the social network for people touched by diabetes in English that we founded in 2007. Now it has more than 20,000 members.
Amazon.com: people can now comment on other people’s reviews (2011 Update: I continue to occasionally write a review, but I can no longer dedicate much time to it, as I used to a few years ago)
~~Kinzin: a social network for families~~ (2011 Update: no longer a member + they are no longer a family-oriented, but a group-oriented photo-sharing site)

New communities, from June 2007 until June 2011:

EsTuDiabetes: when I wrote this article, we still hadn’t started EsTuDiabetes, our social network for people touched by diabetes in Spanish, now with almost 14,000 members.
Quora: I was VERY excited about it at the beginning of the year. I still think it has potential, but I haven’t found it to be useful for a lot of the things I would use it for. This is to say I have gotten very little value out of it so far.
Yelp: since I moved to the Bay Area, it has become a must-use resource to help choose places to eat, car shops, you name it!
SlideShare: a fantastic resource for sharing and embedding documents and presentations.
UStream: a monthly user in connection with Video-Chat sessions we host on EsTuDiabetes. Now it integrates beautifully into networks on Ning.
Wikipedia: I know it may sound like an odd “community” to list, but behind the troves of articles there is a vibrant community that I have made an effort to contribute to as part of the lessons I learned las year.
Ping: Apple’s half-rear-ended approach to do what LaLa used to do. I basically just “Like” songs once in a while to share them via Twitter here and there…

In 2007, I was a member of 13 communities where I participated in on a regular basis! Fast forward to 2012, the number is… (drumroll)… 13! Not much as changed, huh? I guess the level of engagement has changed and having a clear idea of what each community/network is for, realizing that you get what you put into it.

(from this point on, the post is the same as in 2007)

So, I begin to wonder: how much is too much? After all, all of these online communities do add something to my life in one way or another, don’t they? Or is it possible I may be letting other things pass by the side by spending too much time online?

Social Networking Fatigue and Other Online Ailments
A while back, I was filling up my tank at a nearby gas station and noticed an ad above the pump that said: “Has ‘Pay at the pump’ made us lonelier people?” and went on to invite you to hop in to talk to the cashier once in a while, instead of always using your card to pay outside.

That little message stuck with me. In today’s social media environment, we claim to have more “friends”, yet how many people do we really get to talk to, how many folks could we claim we really know. Not too many: like a comment on this post said, “… having friends is about not just sharing information, but responding uniquely and interacting with said friend.”

Is the solution to unplug ourselves in order to deal with the Social Networking Fatigue that comes from dealing with hundreds of people? Should we go cold turkey and erase our names from the Social Networks of the world (good luck with getting Google to wipe you out!)?

That may be a bit extreme, because we’d loose the real opportunity that these tools give us to connect or reconnect with the people we can’t physically stay in touch with. But, in general, we have lost some of that “touch” that things used to have.

Remember the movie Cars? The whole organic experience that Route 66 used to bring to the lives of travelers was substituted by the speed that the Interstate brought to their trips, getting them quicker to where they were going to, but loosing them the chance to really connect with others during their trip through the Southwest desert.

I don’t think there’s any going to go back to our pre-online times (nor does it make sense), but next time you realize it’s been hours since you last spoke to someone, turn off the monitor, grab your keys and go pump gas somewhere. Just remember to say “Hi!” to the guy inside when you do!

4 Reasons I Hate iWeb

Posted on February 4, 2011 by askmanny

Since 2008, we’ve been managing the Diabetes Hands Foundation web site and my wife’s Evolve Art Studio web site using iWeb. Today, after the second overhaul we’ve made to the site is done I find it to be a web creation platform that I wouldn’t recommend to anyone. Here’s why:

It’s NOT web-based. So ironic that a product called iWeb doesn’t offer a way to manage your web site on the web. ALL you can do with it is dependent on the client that is installed in the Me.com account associated with your web site. This means if you happen to have two accounts set up on the computer where you run iWeb from (the case of my wife, who is in charge of our web site changes), better get ready for a lot of closing applications, logging out and logging back in just to make a simple change… PLUS, who’d imagine they wouldn’t make it available via a web interface!
It doesn’t separate content from presentation. This is another way of saying, if you want to change the way your links appear on all pages, from blue to orange, you have to do it on EVERY page. There’s no central place where this change can be made (it’s called CSS!) so this makes for a very painful process redesigning sites build on iWeb.
It doesn’t like Google Analytics too much. First, because there’s no single place where you can paste the Analytics Tracking Code, so you LITERALLY have to paste it on EVERY single page you want to track. Second, if you take a look at your Google Analytics traffic data, because of the way the pages are served, you have to really make an exercise in URL analysis to figure out what page’s data you’re looking at.
Horrible URLs. I can’t say the pages built with iWeb are not Search Engine Friendly. They do OK, but the URLs rendered by iWeb could use some love. Example: when you type www.diabeteshandsfoundation.org and get to our home page, the URL becomes… ta-ta!!

http://diabeteshandsfoundation.org/Diabetes_Hands_Foundation/Diabetes_Hands_Foundation.html

So next time you are tempted to get iWeb, avoid the temptation and look for another option. As for us, by mid-year we plan on migrating our site to WordPress, which reminds me:

Can anyone recommend a good WordPress developer that is willing to give a small nonprofit a good price for a migration project like this one? If so, please drop me a line at manny AT diabeteshf DOT org.

Top 5 Sources for Blog Traffic

Posted on June 16, 2010 by askmanny

I had never seen it anywhere until today… I am talking about Bing as the #1 source of traffic to my blog with a whopping 30% of the traffic vs. a little over 20% now coming from Google Searrch!

See the screenshot showing all traffic sources since May 1:

Apparently, I am not alone and Bing may be a better search engine after all.

Are you seeing anything like this?

When a "cloud" is not in "the cloud"

Posted on June 7, 2010 by askmanny

Are we living in the cloud too much? Yes, I meant to say “cloud” with no “s,” not “clouds.” Well so it seems, indeed!

When you Google “cloud” the results are worth seeing. Naturally, the top results come from Wikipedia, but interestingly the #1 result corresponds to “Cloud Computing“, the ubiquitous term that seems to be anywhere we turn to these days (“Cloud-enabled printer,” “Cloud-based game,” etc.) and at #2 comes our traditional, beloved “Cloud” (remember those? when was the last time you sat down and actually LOOKED at the clouds passing?)

Anyway… this cloud too shall pass to make room for the next marketing meme.

My Favorite Kind of Captcha

Posted on February 11, 2010 by askmanny

Know those semi-cryptic wavy characters that you need to type back in when trying to link to a web site on Facebook or sign up for some web services? They are known as captchas and, in case you are wondering, they are there to try to keep spammers at bay (though spammers are never shy of exploiting good people around the world and pay them to sit at terminals typing these in for pennies an hour…)

This morning (probably the result of not enough sleep or coffee… or both), I was wondering what my favorite kind of captcha was. There are, of course, the ones so cryptic that it takes a true calligrapher to tell what the heck they say! I am sure those keep spammers at bay, but they probably also keep REAL people at bay, because they are so hard to read!

So, I guess my favorite kind of captcha is the one I encounter in Facebook:

I can not only read the words, but it also provides a certain level of entertainment, because they are real words (“wagons” and “unfair” in this case) that leave me wondering sometimes what the connection may be between them… Are wagons unfair? Is it unfair to ride a wagon? What’s a wagon? What’s fair…?

See? Next time, I will get more sleep or get more coffee into my system before I blog!

How fast are we going?

Posted on April 2, 2009 by askmanny

I was catching up on my Techcrunch reading tonight and as I scrolled down the list of posts. As expected, all of them were posted today and many of them were fairly relevant and high-impact.

I started thinking: “How fast are we going?” I mean… so much innovation, happening so fast… Well, here we are today. Buckle up, because tomorrow few people can guess where we will be!

Very impressed with OpenX!

Posted on March 26, 2009 by askmanny

I just finished setting up our communities to use OpenX, as a step in the direction of getting rid of Google Ads. As they describe on their home page:

“OpenX is a free, open source ad server that manages the selling and delivery of your online advertising inventory. You can get OpenX as a hosted service or as downloaded software.”

I am VERY impressed with the backend to help you set up advertisers, campaigns and banners. The only hickup I encountered was related to a delay due to caching of ads that prevents them from appearing for 20 minutes after you first set them up. Otherwise, it worked like a charm.

Here is a video tour of the platform, so you can see what I am talking about:

Getting Started with OpenX from OpenX Limited on Vimeo.

Ask Manny Hernandez

A Venezuelan in Berkeley blogging about social media, nonprofits, diabetes and health 2.0.

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