Press
Collective Discovery in the Times
Article here
Our LAMsight project and collaboration with Amy Farber at the LAM Treatment Alliance were featured in an article in the New York Times. The article discusses various efforts to engage patients in observational studies to form hypotheses and influence biomedical research and contains contributions from Professor Moss and Ian Eslick.
Mining the Everyday Experiment in Proto Magazine
Article here
An article in the Fall issues of Proto Magazine discusses the prospects of mining valuable information from online patient conversation and discusses Ian Eslick's work on LAMsight and highlights ongoing work in the Collective Discovery project to augment patient interaction with data mined from forums and mailing lists.
CollaboRhythm wins CIMIT Prize
Coverage here
CIMIT Prize competition recognizes student research using novel technologies to address major diagnostic and therapeutic challenges in primary healthcare. It calls for technologic innovations with the greatest potential to support and catalyze improved delivery of healthcare at the frontlines of medicine.
I'm Listening on Fox News
Video here
I'm Listening was highlighted on a recent Fox News broadcast in Boston. The broadcast focused on several projects in the MIT Media Lab including Scratch from the Lifelong Kindergarden group and the Chameleon Guitar from the Fluid Interfaces group. There is also an extra piece on John's new project "ForgetAboutIT"
Motorola Collaboration at CES
Video here
John Moore did a collaborative project with Motorola, which was shown at this years Consumer Electronics Show (CES) in Las Vegas. The project focused on the delivery of medication reminders to the patient on the television through the set-top box. The set-top box was linked to the patient's personal health record and to the physicians office, creating a new channel of communication between doctor and patient. The work is highlighted half of the way through the linked video.
CIMIT Forum
Video here
John Moore gave a talk entitled "Persuasuive Interfaces for Medicine: Enabling Patients to Change Health-related Behaviors" at the CIMIT (Center for the Integration of Medicine and Innovative Technology) Forum on January 20th, 2009.
LAMsight
Original article here
LAMsight is a website that gives researchers more direct and immediate access to the global LAM patient population and enables LAM patients to make contribute to LAM research in a new way.
Just imagine if all the LAM patients in the world could report aspects of the physical/ and lifestyle issues that they experience living with LAM in a safe, private, and anonymous (unless otherwise desired) way so that LAM researchers could analyze that information in order to make new connections, identify potential trial candidates, and so much more. Would researchers be able to find new things to investigate, see new patterns in the disease they never saw, maybe discover new treatments and a cure faster as a result? The secret to this disease lies with us, the patients. We can play a role in creating greater understanding of who we are as a truly global population. LAMsight can help to make that happen.
Patients know their disease best. LAMsight allows patients to teach investigators more about what researchers may not be recognizing as relevant to understanding LAM. Through what they learn about us on LAMsight, researchers will be able to ask new questions, learn more about us and how we live with the disease, experience our symptoms and what we do to cope with the absence of a proven treatment. In turn, the information that researcher can access on LAMsight can motivate important new areas of research. Many researchers, especially those who do not see any or many LAM patients, talk about the difficulty they have finding out the most basic information about patient groups much less the LAM patient population globally. Researchers comment that in many cases they become discouraged from pursuing work in the field without access to information about the global patient population. They have said that they would be interested in self-reported anecdotes from patients around the world. There are over 26 separate LAM patient databases that store patient information in different forms. LAMsight will be a central index of all patients anywhere in the world across language barriers, organizational and national lines.
Researchers also talk about the high costs of doing patient recruitment for formal clinical trials. LAMsight eliminates the guess-work involved in planning a clinical trial and enables researchers to find out if a study is worth doing or if a particular study design will be feasible to patients who will be asked to enroll.
LAMsight also enables Patient Investigation. Rather than simply filling out repeated forms for patient organizations, through LAMsight, you can look at the data of the patient population yourself to learn about issues that interest you. You will be able to ask questions of other patients throughout the world and see various trends in the data that are represented in pictures, graphs and charts. Even if you are unsure of how to get involved, you will be able to explore how the site can best work for you and enable you to share in a privacy protected way however much information feels right to you and learn things you care about from others.
LAMsight is still a young project and there are many things to discover about how to make it useful, easy to use, and acceptable to us, the patients, to researchers, to clinicians and to loved ones as well. This site was developed through a partnership between the LAM Treatment Alliance, the MIT Media Lab, Dana Farber Cancer Institute and other partners as resources for the global LAM community. The site is evolving rapidly but because it is being run by the Massachusetts Institute of Technology (MIT) and not for a profit or by a commercial company, it may lack some of the polish of some of the websites that you may be used to. So please, register, join us in keeping our eye on the prize, be patient with LAMsight and please give us your feedback. The rewards that will come from our collective effort will be worth our investment.
To login to LAMsight and to register, go to https://www.lamsight.org
Additional instructions can be found on the site and if you have any urgent questions or problems with the site, you can e- mail lamsight-admin@media.mit.edu for help.
TSI/LTA Global Partnerships Summit
Coverage here
Ian Eslick gave a talk about Collective Discovery on September 13th, 2008 in Brighton, England to Tuberous Sclerosis International and the LAM Treatment Alliance. The talk outlines the inspiration for LAMsight and guides the community about the use of the website.