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A former model who is now chronically ill and struggles just to shower says the people she has met online have become her family. A quadriplegic man uses the Web to share tips on which places have the best wheelchair access, and a woman with multiple sclerosis says her regular Friday night online chats are her lifeline.
For many people, social networks are a place for idle chatter about what they made for dinner or sharing cute pictures of their pets. But for people living with chronic diseases or disabilities, they play a more vital role.
“It’s really literally saved my life, just to be able to connect with other people,” said Sean Fogerty, 50, who has multiple sclerosis, is recovering from brain cancer and spends an hour and a half each night talking with other patients online.
People fighting chronic illnesses are less likely than others to have Internet access, but once online they are more likely to blog or participate in online discussions about health problems, according to a report released Wednesday by the Pew Internet and American Life Project and the California HealthCare Foundation.
“If they can break free from the anchors holding them down, people living with chronic disease who go online are finding resources that are more useful than the rest of the population,” said Susannah Fox, associate director of digital strategy at Pew and author of the report.
They are gathering on big patient networking sites like PatientsLikeMe, HealthCentral, Inspire, CureTogether and Alliance Health Networks, and on small sites started by patients on networks like Ning and Wetpaint.
Sherri Connell, 46, modeled and performed in musicals until, at age 27, she learned she had multiple sclerosis and Lyme disease. She began posting her journal entries online for friends and family to read. Soon, people from all over the world were reading her Web site and telling her they had similar health problems.
In 2008, she and her husband started a social network using Ning called My Invisible Disabilities Community. It now has 2,300 members who write about living with lupus, forthcoming operations or medical bills, for example.
“People have good and bad days, and they don’t know a good day’s going to come Wednesday at 5 o’clock when a live support group is meeting,” Ms. Connell said. “The Internet is a great outlet for people to be honest.”
Not surprisingly, according to Pew, Internet users with chronic illnesses are more likely than healthy people to use the Web to look for information on specific diseases, drugs, health insurance, alternative or experimental treatments and depression, anxiety or stress.
But for them, the social aspects of the Web take on heightened importance. Particularly if they are homebound, they also look to the Web for their social lives, discussing topics unrelated to their illnesses. Some schedule times to eat dinner or watch a movie while chatting online.
John Linna, a pastor in Neenah, Wis., did not know what a blog was when his son suggested he start one after discovering he needed to stay home on a ventilator.
“That day my little world began to expand,” he wrote in a post last year about blogging. “Soon I had a little neighborhood. It was like stopping in for coffee every day just to see how things were going.”
When Mr. Linna died earlier this year, people all over the Web who had never met him in person mourned the loss.
Others use the Web to find practical tips about living with their disease or disability that doctors and family members, having not lived with it themselves, cannot provide.
On Diabetic Connect, a diabetes social network with 140,000 members, people share recipes like low-sugar banana pudding, review products like an insulin pump belt and have discussions like a recent one started by a patient with a new diagnosis. “I don’t like to talk to my family and friends about this,” she wrote. “Honestly I feel helpless. I really just need some advice and people to talk to who might have been experiencing the same things.”
Amy Tenderich is the community manager for Diabetic Connect and writes a blog called Diabetes Mine. “There’s no doctor in the world, unless they’ve actually lived with this thing, that can get into that nitty-gritty,” she said. “I’ve walked away from dinner parties with tears in my eyes because people just don’t understand.”
Patients often use social networks to interact with people without worrying about the stigma of physical disabilities, said Susan Smedema, an assistant professor of rehabilitation counseling at Florida State University who studies the psychosocial aspects of disability.
From her home in Maine, Susan Fultz plays online games at Pogo.com and commiserates with people who are frustrated that they do not have a diagnosis for their symptoms.
“There’s no worry of being judged or criticized, and that is something that I know a lot of us don’t get in our daily lives,” said Ms. Fultz, who has Lyme disease and psoriatic arthritis.
Those with chronic diseases or disabilities, like all Internet users, have to be wary about sharing private health information online, particularly with anonymous users.
Research has also shown that emotions can be contagious, said Paul Albert, digital services librarian at Weill Cornell Medical Library in New York who has researched how social networks meet the needs of patients with chronic diseases.
“If you hang out on a message board where people are very negative, you can easily adopt a negative attitude about your disease,” he said. “On the other hand, if people are hopeful, you might be better off.”
Some people also worry that patients might exchange erroneous medical information on the Web, he said. Yet most patient social networks make clear that the information on the site should not substitute for medical advice, and the Pew study found that just 2 percent of adults living with chronic diseases report being harmed by following medical advice found on the Internet.
Instead, the sites are used to share information from the front lines, said Lily Vadakin, 45, who has multiple sclerosis and works as a site administrator for Disaboom, a social network for people with disabilities. For instance, she has discussed with other patients how to combat fatigue by working at home and taking vitamin supplements.
“That’s what the community can give you — a real-life perspective,” she said.
Original post:
Online Social Networks Bridge Gaps for Chronically Ill - NYTimes.com
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Online Social Networks Bridge Gaps for Chronically Ill - NYTimes.com |
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Google to Redirect China Users to Uncensored Site - NYTimes.com |
Google to Redirect China Users to Uncensored Site - NYTimes.com
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whatup Google?!
A good quote for ya: “China Has the Most Open Internet in the World” - Chief Director of China's state-run Xinhua news agency - LOL
So now, except go through proxy, people in Mainland China can not access Facebook, wikipidia, twitter, youtube, myspace, and now Google! Mhmm, lets see what else is blocked? Blogger.com!!! and of course this blog - AdverComm~ as well
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Video Conference with Jon Steel |
I was so excited to help Dr. Morris arrange the video conference with Jon Steel, who is one of the great practitioners in advertising today. He's book "Truth, Lies and Advertising : The Art of Account Planning" are considered the "Bible" by a lot of account planners ( although I don't really believe in that word). He worked for different agencies (WPP is the latest one) in UK and US as an account planner. Below is some notes I wrote down from the meeting. He mainly talked about the change of account planning today.
• Planning’s changed a lot .
• There are different kind of planners, strategic planners, digital planners, ….
• It’s all about social media. “Everything is digital” is overstated.
• Social media will not change everything.
• Planning is less affordable nowadays.
• The agency has to be committed, to get the advertising right, getting a real idea whether the product works before they give to the clients.
• Agencies choose to measure things that’s easier to measure not bc they should do it this way.
• “we knew more about the brand than the marketing people in the clients company”
• Nowadays, agencies don’t involve as much in the clients busisess (brand management).
• Agencies nowadays don’t say no to clients.
• The training culture does not exist in agencies today as 25 years ago.
• Two types of people – that simplifies and that complicates
• Take a pile of data and bring me data with just an idea in the back of it. – Simplify it.
• Its vital for planners to spend as much time in the real world as they spend time in the agencies, planning is about talking to people, about watching the program the customers watch, getting to know people. You have to do that in the context of real life.
• Take time out of the agency and go think some stuff. Allow yourself to switch off
• To figure out how to let everyone interpret your message in their way. Allow people put themselves in the message/ campaign. Let people personalize advertising campaign/ message/ response.
• The future of planning lies in the history. No matter what media, the best stuff is stuff that engages people, make ppl talk about it. Encourage people to response / interact.
• Even for the digital media today, you really need to know how communication works.
• A good planner tell stories, they have a journalist idea of a story. Another modern trend of planner is that
• Involves a lot of working and gathering information. It’s not just about coming up with good ideas. There’s a logical process before you get to the creative stuff.
• As a planner how do you know whether you’ve done a good job:
• Consumers do not always say what they really feel
• Those guys know how communication works.
• Know how to read body languages
• The effectiveness of your campaign;
• Good planners make themselves useful. If Clients are pleased to see you, they want to see you.
• Create an environment where clients are comfortable to see you, be yourself.
• Where do you get creative and big ideas, when your taking a shower, jogging, … make sure You’ve got the time and space to make that happen.
• Planning to creative good 30 – sec. tv commercials is not different than a website or a facebook campaign.
• For focus group or interview: Most experiences moderators sit back and let people be quiet and be uncomfortable, because some ppl are thinking and creative idea always come from the uncomfortable period of science.
• An example : 63 Million * avenue per customer = number too large to display.
• Retest is very important – nike commercial + got milk campaign in Spanish.
• Right kind of quantitative research and if it’s done well. I don’t agree with quantitative with pretesting commercials.
• Books recommended by Jon Steel.
• The book of Gossage
• More bull more.
• Brand planning - Stephen king
• Painting by numbers.
