Science 2.0 Catching Up?

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! 馃檪

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聽the process of peer-reviews in medicine聽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聽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聽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, Alegr铆a y Esperanza

5 Historias de Orgullo, Alegr铆a y Esperanza

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

1) La historia de Melissa:creci贸 con diabetes tipo 1, escuchando que nunca podr铆a ser mam谩. 聽Decidida a tener una bebe, logr贸 mejorar su control con todo lo que aprendi贸 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 aprendi贸 que los adultos tambi茅n desarrollan una forma de diabetes tipo 1 (tambi茅n llamada diabetes tipo 1.5 o LADA). Le pidi贸 a su doctor que le hiciera dos pruebas sobre las que aprendi贸 en un grupo de personas con LADA en TuDiabetes.org y salieron positivas. Su doctor aprendi贸 sobre algo que desconoc铆a y pudo prescribirle el tratamiento correcto.

3) La historia de TuAnalyze (EsTuAn谩lisis en espa帽ol): esta aplicaci贸n ha permitido a los miembros de TuDiabetes.org y EsTuDiabetes.org agregar y compartir opcionalmente la data del control de su diabetes. Tambi茅n incluye un m贸dulo de encuestas el cual estamos pr贸ximos a utilizar para ayudar a identificar potenciales problemas con dispositivos o terapias para la diabetes.

4) La historia de un libro de poes铆a 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 d铆a 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 az煤car en sangre, ejercitan por 14 o m谩s minutos, se miden el az煤car nuevamente y comparten la experiencia con la comunidad. Normalmente observan una mejora en los niveles de az煤car en sangre de un 20%. Para promover el programa, el patrocinante ofreci贸 una donaci贸n de US$0.75 por cada una de las primeras 100,000 vistas que recibi贸 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.