A Facebook campaign was launched a few weeks ago in order to urge Mattel to produce a bald version of its Barbie doll that will help children with cancer and others who have lost their hair due to illness cope with their conditions while playing. An excerpt from a recent article:
“We hope it gets the message out that being bald is beautiful and is no big deal. There’s no need to cover up,” she said.
Sypin’s own daughter is one of those children. The 12-year-old, named Kin Inich, lost her hair after chemotherapy.
Even though her daughter isn’t a huge Barbie fan, Sypin said she is excited about the idea.
“She said if they make one, she would totally get it,” Sypin said. “The first thing she said was if they make that doll, she would buy a bunch and take them to a children’s hospital and give them to children with cancer.”
2011 was a very intense and exciting year regarding the developments and new insights of the relationship between medicine/healthcare and social media. Here are my favourite stories from 2011 selected and featured month by month.
As the number of medical websites is exponentially growing, it’s getting harder to find quality and relevant resources in oncology, a very sensitive and fast-growing field of medicine. The newest selection on Webicina.com, Oncology and Web 2.0, was designed to help you find relevant and quality resources even in social media. Blogs, podcasts, news sites, communities, mobile apps and many more.
PeRSSonalized Oncology, the simplest, free, customizable, multi-lingual medical information aggregator will also let you follow these resources easily in a personalized way.
Feel free to share any of these resources and let us know if you think others should be added.
If you are wondering how Webicina and PeRSSonalized Medicine work, here are some tutorials:
I’ve recently come across a really controversial story about a cancer patient who blogged and complained about his hospital treatment and has been threatened with legal action by an NHS trust.
Daniel Sencier was worried about delays at Carlisle’s Cumberland Infirmary and had surgery at another hospital. He complained to North Cumbria University Hospital Trust and it came up with an action plan to improve care.
But Mr Sencier, 59, of Penrith, then received a letter threatening legal action. The trust declined to comment.
Mr Sencier, a photography student, had expected an apology but then received a letter saying the trust would consider legal action if his blog contained “unsubstantiated criticism”.
There is a really moving story on CNN.com about a blogger who left a post mortem message on his blog after his battle with cancer. I’ve seen many blogs which just became archives after the blogger (mainly cancer patients) passed away. This is the first time in my experience when the blogger made this transition himself.
“Here it is. I’m dead,” read the last internet post of Derek K. Miller, who died last week after more than four years of blogging about his struggle with colorectal cancer.
“In advance, I asked that once my body finally shut down from the punishments of my cancer, then my family and friends publish this prepared message I wrote — the first part of the process of turning this from an active website to an archive,” he wrote on his blog, penmachine.com.
Findings related to the use of the internet for health information comes from telephone interviews conducted by Princeton Survey Research Associates between November 19 to December 20, 2008, among a national sample of 2,253 adults. A combination of landline and cellular random digit dial (RDD) samples was used to represent all adults who have access to either a landline or cellular telephone. Interviews were conducted in both English and Spanish. For results based on the national sample, one can say with 95% confidence that the error attributable to sampling and other random effects is plus or minus 2.3 percentage points. For results based on internet users (n=1,650), the margin of sampling error is plus or minus 2.7 percentage points. For results based on adults living with chronic disease (n=917), the margin of sampling error is plus or minus 5 percentage points.
Findings related to Americans’ use of mobile technologies comes from telephone interviews conducted by Princeton Survey Research Associates International between April 29 and May 30, 2010, among a sample of 2,252 adults, age 18 and older. Interviews were conducted in English. For results based on the total sample, one can say with 95% confidence that the error attributable to sampling and other random effects is plus or minus 2.4 percentage points. For results based internet users (n=1,756), the margin of sampling error is plus or minus 2.7 percentage points.
AIDS Drugs Lower the Risk of HIV Infection
Synthetic Cell
Blood Test for Alzheimer’s
FDA Approves Botox for Migraines
Taking the Resuscitation Out of CPR
The FDA Restricts Avandia
Blood Test for Heart Attack
Predicting IVF Success
Artificial Ovary
Creating iPS Cells Safer and Faster
If it’s the latter, it may be time to find another doctor. With nearly 90% of online Americans searching the Internet for health resources, it’s likely you and your friends and family already use the Internet to research health issues. It’s true that the web has a jumble of health information, and engaging online takes time, which most health experts don’t have. The good news, however, is that the increasing number of health professionals now embracing the Internet as an important and useful tool for health and wellness is beginning to change your options as a consumer.
Research suggests that regardless of cultural differences, doctors around the world now view the internet as essential to how they practice. And around a fifth can be identified as highly ‘e-reliant’. One of the measures of this is where they get their clinical information, and more than 75% are saying they are getting that information online.
When I was preparing to the next lecture of the Internet in Medicine course, I asked my friends on Twitter whether they know about examples for community outreach by hospitals. Lucien Engelen shared a great example with me. The Radboud University Nijmegen Medical Centre (RUNMC) helps young people with cancer to develop their own community. More details here and in the video below.
Radboud University Nijmegen Medical Centre starts with the development of AYA4 (All information You’ve Asked For) : a unique online community for and by young people with cancer. Soon after the scoping process one of the FIRST steps was to have the Chief Listening Office of the REshape-team start listening to doctors, nurses, patients, parents and others in the informal care. So we as a University hospital facilitated the technique, supported and drove the innovation, but were the patients themselves who determined the content of the community and started filling. They create themselves a digital place where young people with cancer and their families can meet, exchange essential information, ask questions and share knowledge and feeling.
Webicina.com features selected blogs, news sites, medical journals, Twitter users and Youtube channels dedicated to oncology in the newest PeRSSonalized Oncology collection. This is the simplest, customizable, free medical information aggregator. Please let us know if there are other great resources. Don’t forget the Cancer and web 2.0 collection!
You can also add custom Pubmed search boxes to your personalized journal.
Some reasons why PeRSSonalized Medicine is unique:
You can search in the database. It means you will find medical information only from a quality selected portion of the world wide web.
You can personalize any of the sections.
You can also receive the newest Pubmed articles focusing on your search term. Just insert your field of interest, a therapy, a condition, etc. and click Search. Then you can add the newly created box to your personalized medical “journal”.
It is a community-based project. Please let us know which quality resources should be added to the database.
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