Social Media Bringing Patients And Researchers Together

This week, PatientsLikeMe announced the building of an open science platform to allow its users to measure their diseases' progress and share it with medical researchers.

What's the Latest Development?


At this week's TED Conference, the social networking site PatientsLikeMe announced that, thanks to a grant from the Robert Wood Johnson Foundation, it would build a platform that will improve users' ability to track their chronic diseases and share data with medical researchers. A big part of this initiative will involve developing open standardized measurement systems that are easy for patients to use. Only a few hundred of the thousands of diseases in existence have such systems, and with them data that's currently being entered in an ad hoc fashion can be formalized for research.

What's the Big Idea?

PatientsLikeMe has a user base of almost 200,000, all of whom have relinquished their privacy — and gone around built-in medical privacy regulations and proprietary measuring systems — to share sensitive data records in order to learn more about their illnesses. PatientsLikeMe research director Paul Wicks says the open platform will allow researchers "to understand these diseases and learn about them — not for curiosity, not for publication, or for profit, but to take them apart one by one, and consign them to the history books."

Photo Credit: Shutterstock.com

Read it at Wired

Related Articles

Human skeletal stem cells isolated in breakthrough discovery

It's a development that could one day lead to much better treatments for osteoporosis, joint damage, and bone fractures.

Image: Nissim Benvenisty
Surprising Science
  • Scientists have isolated skeletal stem cells in adult and fetal bones for the first time.
  • These cells could one day help treat damaged bone and cartilage.
  • The team was able to grow skeletal stem cells from cells found within liposuctioned fat.
Keep reading Show less

How exercise helps your gut bacteria

Gut bacteria play an important role in how you feel and think and how well your body fights off disease. New research shows that exercise can give your gut bacteria a boost.

National Institutes of Health
Surprising Science
  • Two studies from the University of Illinois show that gut bacteria can be changed by exercise alone.
  • Our understanding of how gut bacteria impacts our overall health is an emerging field, and this research sheds light on the many different ways exercise affects your body.
  • Exercising to improve your gut bacteria will prevent diseases and encourage brain health.
Keep reading Show less

Giving octopuses ecstasy reveals surprising link to humans

A groundbreaking new study shows that octopuses seemed to exhibit uncharacteristically social behavior when given MDMA, the psychedelic drug commonly known as ecstasy.

Image: damn_unique via Flickr
Surprising Science
  • Octopuses, like humans, have genes that seem to code for serotonin transporters.
  • Scientists gave MDMA to octopuses to see whether those genes translated into a binding site for serotonin, which regulates emotions and behavior in humans
  • Octopuses, which are typically asocial creatures, seem to get friendlier while on MDMA, suggesting humans have more in common with the strange invertebrates than previously thought
Keep reading Show less