OrganizedWisdom Health Blog

90% of Women Use Internet to Search for Health Info

There's another interesting survey  from Burst Media which tells us more of what we already know:

People are going to the Internet first to search for health information.

In fact, the research shows that the internet - rather than healthcare professionals - is now by far US households' main source for healthcare information, and women more frequently than men seek such information.

Click here to get a lot more of the statistics from the report.

So we know people are going to the Internet to search for health information first.  But, are they finding what they want and is the information they are finding credible, trustworthy, and useful? 

For those who are adept at searching online, we suspect that they are eventually finding great information.  That's because there is so much great health information available online now.  There's also a lot of wisdom and practical advice from patients and ordinary people with experience. 

But from our experience this information is becoming increasingly more difficult to find.  We know because that's what our health guides do all day -- they search for the very best health content, resources, and wisdom to find the very best stuff.  The challenge is, it can take hours to wade through hundreds of links to find the very best message board on a topic.  Or to discern if a blog post is from a credible source or not.  Or to search page after page of search results only to get links to the very same content, but on a different Web site.

The good news is that there are now really great health resources online.  Most of them freely accessible and many that have been reviewed by physicians.  The key is finding the best stuff.

We're now creating WisdomCards, or search results pages, for hundreds of the most popular health topics.  We're trying to do the work for you, and clean up a lot of the clutter along the way.

Here's an example of a WisdomCard we have created on the topic of Breast Cancer.

Here's the same search on Google:

And on Technorati.

We'd love your feedback on which one you would want to send your family to and why or why not?

With so many people now turning to the Internet first, it's essential to clean up health search and give people great, organized results.

White Paper Provides Strategy to Help Drug Firms Leverage Social Media Safely

Over the past year and a half, we have met with marketing executives, compliance officers, and lawyers from more than 20 of the world's top pharmaceutical companies to discuss how they could and should be using social media to join the conversation and connect better with patients.

We felt there was (and still is) a significant opportunity for them to leverage the power of social media to share information and education to try and bridge the massive divide that currently exists between Big Pharma and the people who buy their products.

But meeting after meeting, we would be met with resistance to the effect of, "We don't do social media; We don't want to lose control; We can't use blogs..." and so on.

Being the resilient entrepreneurial types that we are, we pressed on determined to convince these companies that a healthy dose of transparency and openness would go a long way in improving relations with customers. We even developed a presentation called Pharma-Friendly Social Media to try and bridge the gap between these companies and their customers. Still, it was always an uphill battle trying to get these companies to start listening and communicating to their own customers. (If they listen, they might learn about adverse events, which is a big no-no.  Then they have to file lots of paperwork and disclose issues that may impact their drugs, etc.).

One of the biggest challenges was that the FDA has yet to issue guidance on how to conduct monitoring and marketing practices in social media so pharmaceutical companies are unsure how to proceed. And as we quickly learned, no one wants to be the guinea pig with new innovations in the pharmaceutical industry. And for good reason, Big Pharma must be cautious, conservative, and follow the letter of the law.

It is unclear when or if the FDA will issue guidance on the many new issues that have come up as a result of social media, the Internet, and online marketing. Until the waters settle, we recommend each company take baby steps and get involved. Bring your marketing teams and compliance teams together to figure out how to take the first steps.

And step one should be reading this new White Paper just co-authored by Fard Johnmar from Envision Solutions.

MedBillManager Makes The Wall Street Journal

There's a great article in the September 4th issue of the Wall Street Journal about new services that are helping consumers better manage their medical bills.  Several of our good friends were featured including MedBillManager.com, WebMD, and Revolution Health.

Read the full article here: Slew of Online Tools Let Consumers Create and Manage Their Digital Records;
Typing It In Yourself

We were particularly happy to see MedBillManager featured.  If you haven't met Christopher Parks yet, one of the founders of MedbillManager and you care about the Health 2.0 space than you really should.  He is one of the most passionate people in the space and he is on a mission to truly improve people's lives based on his own experience and challenges with the health care system when taking care of his parents. They continue to innovate tirelessly and it is great to see their hard work making a difference in people's lives.

Congrats to all featured in the article and we look forward to seeing you a;; at the Health 2.0 conference this month.

Is Today's Internet Killing Our Culture? Why Human Intermediaries Are Essential In A Web 2.0 World.

For anyone interested in social media, the concept of the Wisdom of Crowds, or the meaning of a flat world, we highly recommend watching this presentation by author Andrew Keen as part of the Authors@Google series.  Mr. Keen discusses his book "The Cult of the Amateur: How Today's Internet Is Killing Our Culture" and he makes a compelling argument for the value of intermediaries in a Web 2.0 world.

Over the past year as we've been building OrganizedWisdom to help guide people to safe, inspirational and credible health information, we've been thinking a lot about this issue and figuring out the best way to tap into the power of people sharing their own stories and recommendations. 

The biggest issue has been with figuring out the best way to organize all of the great wisdom being shared across the web, and determining the role our editors, guides and medical reviewers in helping curate all of this information. 

These are some of the questions we been dealing with (and continue to deal with) since the beginning: What rules need to be established to guide people to quality information? How do we protect people from spam?  What role should editors play?  What types of content should be considered user-generated? Is a doctor-video on YouTube user-generated? Should we include links to wisdom that are also promoting a specific product or service? And so on...

Mr. Keen makes some important statements in this presentation about the essential need for intermediaries in a world where everyone has essentially acquired their own "printing press". 

To paraphrase, he says in the Web 2.0 world, everyone is able to publish themselves. You don't have to have programming skills to be a blogger.  You don't need to have gone to recording school to produce a video.  Web 2.0 makes it very simple to create and distribute because it does away with the middleman.  And according to many who evangelize the value of Web 2.0, the middleman is bad, corrupt. Gatekeepers are bad.

But, Mr. Keen argues Web 2.0 is not a viable economy because we need middlemen.  We need the expert. Whether in marketing, creativity, or content creation, the middleman helps discover the best talent and polishes their work.  The intermediaries are the core players in any media system whether Web 1.0, 2.0, 3.0. If we do away with the intermediaries we are undermining media because we are undermining talent.  He warns the reality is that talent is scarce.  The core value of the ecosystem in media is finding and distributing this talent.  The ecosystem is HUMAN.  The only way of discovering and polishing the best of the best is a human function. Not an algorithm.

There is a lot we agree with in Mr. Keen's thinking.  That is not to say we are not proponents of everyone having the ability to publish, and create, and share.  We just agree that there is great value in helping organize, structure, and lend credibility to the best of what the crowds are creating.

Because this flattened media is more open to corruption and lends itself to illegitimate characters gaming the system to their advantage, we are seeing the proliferation of clutter, spam, and junk mixed in with all of the greatness, inspiration and wisdom.  How do we know what information is great/trustworthy/credible in a Web 2.0 world being infiltrated by people who are using the same virtues of open media to sell products, manipulate or satiate their ego? 

Mr. Keen makes a defense of a media with formal, official, and transparent gatekeepers because he believes "Web 2.0 is too easy to game.  To easy to play around with.  Too many sites are too easy to fix."

"The problem with this flattened world," says Mr. Keen, "is when you do away with formal gatekeepers, the problem with web 2.0 media is it is increasingly becoming one long commercial break. Increasingly hard to distinguish between paid content and free content.   The whole thing becomes one long advert.   It is becoming more difficult to distinguish between content and advertising."

We are seeing many of these issues being worked out as communities like Wikipedia institute more guidelines, editorial controls and moderation.  But there is clearly a lot more to be done in order to weed out the junk. Social media and collaboration are incredibly powerful, but as the Web expands it is becoming more clear that humans are an essential ingredient in helping monitor, organize and guide us to the very best wisdom of crowds.

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."