"When my child was diagnosed, I left everything and turned to research this disease. I promised myself that my life would be driven by efforts to make my child’s life normal and to give my child tools for handling these handicaps in a positive way. So far, so good. He has the tools, he lives life to the fullest. He is married and totally independent of me. Though he lives hundreds of miles away, he knows I am standing behind him, and when he needs help, I am there in a nano-second."
— As part of the research for our report on family caregivers online, we asked members of the National Organization for Rare Disorders (NORD) to write short essays about their use of the internet in caring for themselves or for their loved ones. This mother described how she stepped up to the challenge.
"[Caregivers] are creating the tools that they need, just as hackers create the tools that they need."
— Susannah Fox, in GigaOM’s article on our new report
"It occurred to me that if Uncle Burt went online, for the first time in his life he could have relationships that were not limited by his disabilities. I was able to put him in touch with some of my friends and he communicated with some people who shared his affection for the soap opera, “Days of Our Lives.” And then, when the web first started, I tried out new search engines with arcane terms like “Moebius Syndrome” and one day, I got a hit. … And Uncle Burt heard for the first time that there were other people like him. For the last year of his life, he was the elder statesman of a very small but very excited community and it would not have been possible without the web."
The internet’s impact on one man’s life — another great commentary by our Susannah Fox, as recounted to her by Nell Minow.
Read the full story …
"The most important source of information for people making a day-to-day health decision, in many cases, is not a website, or even a clinician, but another person who shares the same condition. As mobile, social tools spread throughout the population, people are connecting with each other. Why not harness those tools for health?"
Pew Internet & American Life Project Associate Director of Digital Strategy Susannah Fox presented the project’s data on communities of color and young people, particularly as it relates to health, twice this week — On Wednesday as a guest of the Federal HIV/AIDS Web Council and on Thursday as a speaker at a meeting convened by CommonHealth ACTION. She wrapped up her insights here.
- 83% of U.S. adults own a cell phone.
- 35% of U.S. adults own a smartphone and one-quarter of them use their phone as their main source of internet access.
- This trend is especially pronounced among adults ages 18-29, adults who identify as black, and adults who identify as Latino.
- Text messaging is an epidemic among 18-24 year-olds. This group sends or receives an average of 109.5 text messages PER DAY.
"Peer-to-peer healthcare is a way for people to do what they have always done – lend a hand, lend an ear, lend advice – but at internet speed and at internet scale."
— Associate director Susannah Fox in her closing keynote at the Medicine 2.0’11 Congress at Stanford
"If you enable an environment in which people can share, they will. And the benefits of that sharing will entice other people. That’s peer-to-peer health care."
— Associate Director Susannah Fox, discussing how people find and share health information online