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.

5 Historias de Orgullo, Alegría y Esperanza

Posted on October 6, 2011 by askmanny

5 Historias de Orgullo, Alegría y Esperanza

La presentación que compartimos en SIMO Network (Madrid), el 6 de octubre del 2011:

1) La historia de Melissa:creció con diabetes tipo 1, escuchando que nunca podría ser mamá. Decidida a tener una bebe, logró mejorar su control con todo lo que aprendió en TuDiabetes.org. Tuvo una hermosa bebe y ahora espera un segundo bebe.

2) La historia de Alana: luchando con un tratamiento para diabetes tipo 2 que no le daba resultados, eventualmente aprendió que los adultos también desarrollan una forma de diabetes tipo 1 (también llamada diabetes tipo 1.5 o LADA). Le pidió a su doctor que le hiciera dos pruebas sobre las que aprendió en un grupo de personas con LADA en TuDiabetes.org y salieron positivas. Su doctor aprendió sobre algo que desconocía y pudo prescribirle el tratamiento correcto.

3) La historia de TuAnalyze (EsTuAnálisis en español): esta aplicación ha permitido a los miembros de TuDiabetes.org y EsTuDiabetes.org agregar y compartir opcionalmente la data del control de su diabetes. También incluye un módulo de encuestas el cual estamos próximos a utilizar para ayudar a identificar potenciales problemas con dispositivos o terapias para la diabetes.

4) La historia de un libro de poesía sobre diabetes: No-Sugar Added Poetry recoge poemas escritos por miembros de TuDiabetes.org. Con el patrocinio de Laboratorios Roche, publicamos un volumen que hoy en día permite que las personas que lo leer no se sientan solos en la etapa de su vida con diabetes en que se encuentran.

5) La historia de la Gran Prueba Azul (Big Blue Test): los participantes de la Gran Prueba Azul se miden el azúcar en sangre, ejercitan por 14 o más minutos, se miden el azúcar nuevamente y comparten la experiencia con la comunidad. Normalmente observan una mejora en los niveles de azúcar en sangre de un 20%. Para promover el programa, el patrocinante ofreció una donación de US$0.75 por cada una de las primeras 100,000 vistas que recibió el video promocional que produjimos. Como resultado, donaron $75,000 que fueron distribuidos entre dos ONGs dedicadas al trabajo humanitario entre pacientes con diabetes en el tercer mundo.

5 ways to improve your newsletter

Posted on August 24, 2011 by askmanny

1) All email newsletter platforms give you some kind of reporting. We use Constant Contact. Check into the data for your reports. See how your Open Rates and Click Rates compare to market averages. Open rates should be at least somewhere around 10-20% (i.e. this percentage of your messages that didn’t bounce should be opened if the subject line appeals to them). Click rates should be somewhere around 15% too (i.e. this is the percentage of your opened messages that got clicked on, with each click counting towards it).

2) If you are seeing a low Open rate, try playing with the subject line: avoid things like “Our newsletter – August 2011″ in favor of things like “Learn why it pays off to do XYZ”, i.e. include something that will make more people want to open the email, such as including a reference of what they can expect inside. Think action verbs, teasers, things that will prompt an action, not things that are descriptive.

3) If you are seeing a low Click rate, try working with the content. If you have too much content on the newsletter, it will likely not be all read, but it will still likely take you very long to put together. People’s attention span typically won’t go beyond a minute or so per email, so keep it short (test it yourself: read it and see how long it takes you). This is an example of a newsletter (ours) that is intentionally not too long.

4) A very good way to reduce the amount of content you include in a newsletter is to blog about it and LINK to it from the newsletter, instead of including all the content in the newsletter. It will make for an easier-to-skim piece too, which will likely engage people until the end of the newsletter.

5) Another way to reduce the amount of content you include in a newsletter is to send more frequent (though I would recommend against more frequent than weekly) newsletters, with less content each.

What pieces of advice you have for people wanting to improve their newsletters?

Vote for our SXSW Interactive Panel!

Posted on August 15, 2011 by askmanny

A few weeks ago, I was approached by Amy Sample Ward (@amyrsward) and Debra Askanase (@askdebra) to join them, Jess Main (@jessmain) and Vanessa Rhinesmith (@vrhinesmith) in a panel proposal for SXSW Interactive 2012.

Here is our proposal:

Social Media Boundaries: Personal/Personnel Policy

Description
As our networks expand, our profiles get more public, and our work requires a human face, where do we draw the line between personal and professional identities online? How do we maintain those boundaries for our community members? How do we respond to attacks, opportunities, and over-shares online? When does over-sharing hurt the community? When should you share your own personal stories as a manager, or personally reach out to community members? Growing and cultivating an active community also requires that the community manager walk the fine line of personal and professional sharing. Every community manager wonders when and how to professionally cultivate leaders and members to create a thriving community while still being personal. On the reverse side, sometimes community members share too much, which can hurt the health of the community. This panel will address these questions and more from experience in nonprofit and public media sectors.

Questions Answered

How and when is it most appropriate to engage personally with community members, as a community manager?

Can mixing professional and personal help online communities thrive?

How to handle oversharing and other inappropriate community member contributions?

How do you handle personal attacks within communities?

How do you address personal use in social media policies?

Here are 161 other great proposals in the Greater Good/Charity/Social Good category (yep! it’s pretty competitive…)

Please vote for us!

We need your support to show SXSW that there is a need for a panel to address the topic of Social Media Boundaries: Personal/Personnel Policy.

THE DOC: What the Heck Is Going On?

Posted on July 31, 2011 by askmanny

The presentation I will be doing next Wednesday at the AADE Annual Meeting 2011 in Las Vegas with Hope Warshaw (@HopeWarshaw), Amy Tenderich (@AmyDBMine) from DiabetesMine and David Edelman (@DavidTalk) from Diabetes Daily.

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!