OrganizedWisdom Health Blog

Health Foundations and Charities Have Discovered Twitter

Today, I got an interesting "Friend Add" on my Twitter Feed.  It was from "Pink Ribbon Search".   

Whenever a new person (or company) adds my feed to their list I check them out to see if I want to reciprocate by following their Tweets too.  So when I clicked on Pink Ribbon Search profile link I was intrigued to by how they are using Twitter to help raise $1 million for breast cancer research.  While I wasn't all that impressed with the content in many of the Tweets (posted messages), this was the first time I have seen a charity or health foundation use the Twitter technology to advance their cause.

It will be interesting to see how many foundations and charities pick up on this new application of Twitter.  Judging that Pink Ribbon Search already has 8,540 Friends and 746 Followers, I suspect pretty quickly.

Why We Love Basecamp from 37Signals

A few weeks ago, the folks over at 37Signals interviewed us about how we use Basecamp to help manage our business.  We've been customers of Basecamp since we started OrganizedWisdom, and it has been an incredible tool for us from the beginning.  In fact, we've been recommending it to friends and colleagues since the beginning which is why we agreed to share our thoughts about Basecamp on video.

How we use Basecamp Video: http://www.basecamphq.com/customers/organizedwisdom

We are big believers in the power of "simplicity" and collaboration.  Basecamp embodies both of these elements which helps us stay nimble and efficient. This in turn, helps us focus our energy on innovation and product development rather than meetings and pushing paper around.   

Whether you are a tiny virtual start-up, or the leader of a large team, do yourself a favor and check out Basecamp for your business. 

Fighters Tackle Childhood Diseases

"You cannot love a thing without  wanting to fight for it." -- G.K. Chesterton

Have you ever been angry at a disease? Sometimes we get angry at the diseases that hurt us, but most often the strongest anger comes when disease attacks someone we love -- especially a child.

The folks at FightSMA are taking their anger -- in this case, at spinal muscular atrophy, a genetic disorder that in some cases can kill children before their second birthday -- and doing something about it. They're angry not just that the disease exists, but that an effective therapy is almost within the grasp of the medical world.

SMA is genetic, and scientists know that at least 7 million people unknowingly carry the marker for it within their DNA. If two of those people have a child together, that child has a 1 in 4 chance of having the disease.

The families and advocates of FightSMA take their fight seriously. They have successfully lobbied to raise the public profile of this illness and raise money for research into its causes and treatments.

FightSMA has been around since 1991, founded by Joe and Martha Slay, whose son Andrew has survived to go to college and become an advocate in his own right. Martha's years of advocacy have helped her forge connections with other "fighters" -- parents of children with serious or chronic illnesses. Online, the FightSMA experience has led to:

• FightSMA.org, a site with information about the disease and current lobbying efforts
• Fightermom, a guide for family members who take on disease advocacy projects
• Fightermom Forum, an online community for disease advocates
• A FightSMA blog with updates on disease research
• The Fighting Back podcast, produced by FightSMA member Steve Mullen, highlighting disease advocates and talking about the issues they face

These folks use "Fight" in their name for a reason. They're using different Web "weapons" (blogs, forums, community) to make their case, and they're making a difference. Along the way, they're letting other families in similar situations hear the message, "You're not alone. You don't have to do this by yourself."

Where Have You Gone, Doctor Blogger?

Fard Johnmar of HealthCare Vox recently gathered up a bunch of different posts about a decline in doctor-bloggers, some of whom have quit or cut back on their blogging because of real or perceived threats to their jobs. (Or, in the case of flea, because his now-defunct blog became an issue in a malpractice case.)

Blogs by medical professionals pose a special concern for them, their employers and their patients. Yet they're also a valuable source of insight into the professional lives of the people we turn to when we need health care.

I like the rules Fat Doctor (who almost quit blogging when a colleague identified her and showed printouts of her blog posts to her boss) sets for herself and lists at the top of her page. Among them:

As a medical blogger and a patient myself, I take HIPAA very, very seriously.  If one of my patients were to stumble upon this blog and recognize himself, I would want to curl up and die.  More than that, I would be hung out to dry by the attorneys who make HIPAA violations their livelihood.  Mostly, though, it would be wrong.  It is wrong to blog about a patient or his/her family.  Period.

Therefore, any patient story on this blog is a work of fiction inspired by multiple patient encounters.  Any resemblance to any person or family member, living or dead, is purely coincidental. ...

Never write anything about anyone that you wouldn’t say to his/her face.  If it would hurt your relationship in any way, don’t do it.

Sit on patient stories and any questionable posts as drafts for 24h before publishing them.

Don’t become so involved in the blog that I ignore the beauty of my non-cyber world, including my non-cyber friends and non-cyber family.

While health professionals may face new restrictions (some self-imposed) in their blogging, patients are increasingly discovering the value of blogging as a way to chronicle the progress of a condition or treatment, share their experiences with others who may be facing similar conditions, and spread information about little-known conditions. To pick just one example, check out Sick Girl Speaks, a blog by a woman with cystic fibrosis who's had two double-lung transplants, looks at the wider issues around patient experiences with serious illness:

I have seen in myself and others who live with serious illness the tendency to compare and judge the severity of another’s maladies. Strangely, it can be almost a sense of superiority that underlies the need to pronounce “My boo boo is bigger than your boo boo” and therefore write someone off as a “baby” or insensitive to the people with real problems. 

Conversely, I have seen many people be afraid to share their difficulties with someone like me because “they have no right to complain when they see what other people are dealing with”. The question I pose: Isn’t there enough compassion to go around?

Do you know of a great blog by a health professional, or by a patient? Add a comment and let us know!

Why Web 2.0 Matters to Health Companies

John Sharp of eHealth has posted the PowerPoint slides to a presentation he recently gave on Web 2.0 in health care. It's a useful roundup of current trends for those who are new to all this -- if there are people in your organization who needs to be convinced that social networking is important to health care, show them this.

I particularly liked his comparison of the values of the health care industry to the values of Web 2.0. He also encouraged health organizations not to prohibit participation by their employees -- the kind of ban that has produced many "stealth" blogs by doctors, nurses and others who hide their identities for fear of retaliation. Instead, he recommends following IBM's sensible policies.

Tap Your Toes, Big Apple

OrganizedWisdom's symbol is the apple, long associated with health and well-being. While an apple a day may not keep the doctor away -- indeed, the doctor is probably booked up through August -- it's still an appealing and nutritious choice. There's even been a recent study suggesting that apple juice is associated with asthma prevention in kids.

The apple is also associated with New York City. The Big Apple is home to OrganizedWisdom, and also  home to many of the nation's leading health-related companies, hospitals and technology innovators. It's  a city where health is serious business, as restaurateurs found out when city officials recently banned the use of trans fats.

So why is it illegal to get up in a bar and dance in New York -- surely a far healthier thing to do than some of the other available activities in bars? The city has recently seen a number of protests against its  law banning dancing in establishments that haven't procured a hard-to-get cabaret license. (The law is a shameful bit of New York history, aimed at preventing interracial dancing.)  

As many people already know, dancing can be a great cardio workout. You don't need anything but a beat, and there are so many styles available that it's hard to get bored. Schools across the nation are installing Dance Dance Revolution setups to get kids moving. So come on, Big Apple. Let the people dance.