Along with the most open and most staggering expanse of information we have ever seen, has come an equally staggering amount of misinformation. Most of us receive one email hoax after another — from missing children to easy ways to make money.

An effort online is afoot to help people sort through misinformation on the web. Sites such as Snopes, one of the most popular rumor checking destinations online, sort out information ranging from old wives’ tales to current events.

We’ve learned an increasing amount about how to stave off misinformation online. Newer technologies with rapid sharing capabilities, such as Twitter, however, present new difficulties in digital media literacy.

Twitter’s power to inform and connect people is huge. I experience these benefits every day. But let’s face it. Twitter’s power to misinform may be similarly huge. We’ve seen misinformation spread through the network during the 2009 H1N1 flu outbreak and the 2009 Moldova riots. Most recently, a study showed widespread confusion about antibiotics is shared throughout Twitter.

I’m currently taking a grad school class on digital media literacy, and for it, I created this video to help people sort out misinformation from good information on Twitter.

I’m currently taking a grad school class on digital media literacy. I’ve proposed for a project to create an instructional presentation on how to be “Twitter literate.” My initial thoughts are in the slides below. What do you think? Is this a good idea, or not? Any thoughts as to what to include?

Can social networks help people change their health behaviors? Some have claimed yes, some no, and digital public health heavyweight, the brilliant Susannah Fox, weighed in today at the #DCWEEK Pew event: Public Health: What’s Digital Got to Do With it?

The answer: we don’t yet know, but if Susannah has anything to do with it (and, uh, she does!), we may know someday.

So, what do we know about how social relationships affect health behaviors?

According to Susannah, we know:

• Health is social. In a recent Pew report, two thirds who looked online for health information talked with someone else, usually a peer, about the information they found.
• Chronic disease has an independent negative affect on having access to the internet, but, once online, having a chronic disease is associated positively with using the internet for health, blogging for health, participating in online discussion on health, etc.
• Offline social networks affect behaviors. Obesity can spread through social networks (check out the book Connected, which discusses how obesity spread through the Framingham heart study’s participants’ networks).
• Text reminders can help with medication adherence. A Boston study showed this to be the case in getting people to use sunscreen.

So now what?

According to Susannah, we already have a learning system — social media. While we don’t yet know the effects, we do know that people are using social media, and we can make some inferences based on offline social networks what the effects MIGHT be. Again, the research has not caught up with our eagerness to know.

Susannah concluded with some great food for thought, and an appeal for more research beyond anecdotal examples.

• Can there be a network effect?
• Can people change their health behaviors based on what they see in their personal online social networks?
• What is the power of peer to peer advice and how can we harness it?

I’m sure looking forward to seeing what further research comes out of these questions. You?

The federal government’s one-stop new media shop for HIV/AIDS information, AIDS.gov, recently published its strategy for integrating new and “old” media channels, and you can check it out below, courtesy of Path of the Blue Eye on Slideshare. There are some great nuggets here, including AIDS.gov use of Forrester’s POST (people, objectives, strategy, technology), its new media use in matrix form, its staffing set up, and its future planning ideas.

Now that the threat — for the time being — of H1N1 flu appears to have waned, there’s plenty of vaccine to go around. But with health officials warning of a possible third wave of H1N1 flu coming this spring, it’s still important to get vaccinated. HHS and CDC are pulling out all the stops this week encouraging people to get their vaccines. As a pregnant mom, I already got mine, and I hope, for the sake of my wee one to be, that others will as well.

In honor of World AIDS Day today, I want to share this presentation I found on Slideshare today via Next Generation Pharmaceutical. Although we are living in an age where an HIV diagnosis is no longer a death sentence, the visuals in this presentation show the magnitude of people throughout the world who continue to struggle with the disease.

When I read recently about the various new hospital visitor policies changing throughout the country due to H1N1 flu, I thought, ok, makes sense. Why wouldn’t you restrict healthy children, among the most vulnerable to swine flu, from visiting care centers for the sickest people?

But I also thought…how sad, especially this time of the year. Many kids will be in the hospital through the holidays and their families will likely face certain limits on who or how many people can visit. This means some families who need to be together the most this season will not.

Then, today, I saw this Facebook post from Children’s National Medical Center, whose visitor restrictions include a limit of two family members in a child’s room at one time.

A slew of long, emotional comments followed. Admittedly, I was nearly in tears (and I’m pretty sure it wasn’t the pregnancy hormones).

“…one thing that made it nice was that the staff was a little lax with visiting hours…”

“…I’m sure this holiday season will be more challenging for families and harder on children…”

“…hardest is missing the special traditions of home and not having all of family together…”

I am really impressed by how  humanly the good PR folks at Children’s are handling this issue.

Yes, they issued a standard formal statement. But they are also using social media communities – Twitter and Facebook – to communicate with parents they are trying to reach using two-way conversations.

Putting the Public Back in Public Relations

Children’s is just one of many hospitals to jump on the social media bandwagon, but I think the medical center is doing a particularly fine job of, as Brian Solis and Deirdre Breakenridge put in their latest book, “putting the public back in public relations.”

The book discusses how top-down messaging strategies, news releases with canned quotes and jargon, and one-way communication led over time to a less credible, less transparent public relations profession.

Solis and Breakenridge argue that the social Web, however, is forcing the reinvention of a PR field that instead focuses on conversation and engaging in meaningful two-way communication. PR has always been about relationships, they say, and we’re living in a time when PR pros can earn new found recognition by turning virtual relationships into real relationships.

Sociology First, Technology Second

My point, and what I think Children’s did really well with its latest Facebook post, is that communicators have an opportunity to humanize stories with social media. Solis and Breakenridge discuss this, and I think it’s their strongest argument. News releases are one-way, but with two-way communications you can really connect with the people you are trying to reach based on their needs and interests.

So while you must release your official statement updating people on your hospital’s new visitor policy because of H1N1, you don’t have to stop there any longer. Through social media and online communities, you can talk directly about the change with people who most affected, see how those people talk to each other, and learn more about what they want.

Does it get any more human than that? Kudos to Children’s. I look forward to watching them more as they grow in the social media space.

One of the things I love about working in health communications in the Web era is that I get to cross time and space in bringing health information to people who are looking for it.

Recently I was working on some Web content related to Fanconi Anemia (FA), an extremely rare, inherited blood disorder that leads to bone marrow failure. I searched the social Web, and I found this Ning social network for FA awareness and this Facebook group, on which parents and patients are doing everything from fundraising to seeking social support.

And I thought, wow. This is a really cool example of the “long tail” theory.

The Long Tail

Well, maybe not. The long tail is a theory of economics. So I’m wondering: would it be completely wrong to apply it to a concept that has nothing to do with economics? The much-hyped long tail has been questioned as a business theory here, here, and here, after all. Maybe it’s less of a valid economic theory, and more of an explanation of the power of the Web to cater to small niche audiences.

The Long Tail: Chris Anderson

The long tail theory in a nutshell, in the words of its creator Wired’s Chris Anderson, says that our culture is ”increasingly shifting away from a focus on a relatively small number of ‘hits’ (mainstream products and markets) at the head of the demand curve and toward a huge number of niches in the tail.”

The main reason for this is that the Web offers unlimited choices in products and information. While a physical store only has room for so many items to sell, the Amazons and the Netflixes of the Web can afford to stock products to increasingly meet the demands of small, highly targeted audiences.

The Long Tail of Health Information

Now, back to the idea of the long tail of health information in terms of rare diseases, such as FA. Not only are there opportunities for those providing health information about rare conditions, such as NIH, to take advantage of the long tail and release all information in accessible, searchable formats, but patients can find and connect with people who have information about the condition.

If you think about your network of friends and contacts, a long-tail pattern will likely emerge. You probably talk to the same group of trusted people time and time again, and gather a smaller amount of information from countless others beyond your core group. On a daily basis, this works well, but what happens when you or your child is diagnosed with a condition like FA? Online social networks can help you find people and sources on the right-hand side of the “long tail” curve that, without the Web, you most likely would never come across.

Now, there are niche social networks such as Rare Share, for people coping with extremely rare illnesses that can put you in touch with fellow patients worldwide. We know that social support, at a minimum, helps patients cope with chronic illnesses and can even aid recovery. So, while Rare Share is not going to be the next Facebook, it doesn’t matter. The long tail of information in the social Web makes its existence possible, and hopefully, sustainable.

Well, what do you think? Am I making a leap?

What makes an online community successful and why do so many fail?

Take the do-it-yourself social network Ning. With 1.5 million networks and 33 million members, why are only a handful of Ning networks widely popular while about 80% of the networks fail?

According to Clay Shirky, author of Here Comes Everybody, almost everything on the social Web fails. But because “failure is free” or low risk, he says, failures are necessary to allow for the few successful communities. Ning, with its low barriers to entry, has not only a shear critical mass of participants to glean the rare successes, but its creators can continually learn from the network’s failures to find evidence of what works and what doesn’t.

Shirky says it’s only when a technology becomes normal and ubiquitous that the really profound change can happen, and change, even more than we have seen already, is coming. He likens the advent of social media and the internet to a new media revolution more significant that the printing press, the telephone, or broadcast media. The largest increase in human expressive capability in our history, he says, is a result of social technology that allows two-way conversations and the ability to create groups.

Our species, natively good at group action, is using our new two-way group forming social tools as an extension of those capabilities in ways varying from the open source movement, to Flickr, to Twitter.

But, before we get into some tips for creating successful online communities, let’s review a little history.

Groups are complicated, and become more complicated as they grow. Double the size of a group and you quadruple the size of the connections among the groups. The more connections, the more costs. This is why we need organizations, whose roles are to lower the transaction costs of large groups. In fact, if an organization cannot handle the exponentially increasing communication associated with the growth of its network, it will break down at large scale, known as Coase’s ceiling. The typical approach has been to deal with this based on organizational hierarchies.

What we are seeing now is that instead of hierarchy, we have tools that make larger groups ad hoc and lightweight. We have the ability for “ridiculously easy group forming,” which Shirky quotes from computer scientist Seb Paquet, significantly reducing the transaction costs of group forming and threatening the established structure of organizations.

Shirky claims that a medium such as social media that is available easily, accessible, and group forming, is a medium with the potential to change society. He describes a ladder of behaviors to explain how much an individual needs to work to coordinate action with groups, steps through which aggregated individual action leads to coordinated group change.

The steps are sharing, conversation, collaboration, and, the toughest, collective action, in which the fate of an entire group become important to all members.

Tips for creating an online community

So what did I learn from Shirky’s book about how to create a successful online network? If I were recommending one to a client, here’s what I’d say:

· Provide value. Members should know what they can do with the site from the outset. Simply tell people what your site does and how it can benefit them.

· Make it easy to join. High barriers to entry and excessive effort to join a network make success difficult.

· Understand your audience. Go beyond market research and get at the real needs of your audience in a media environment based on two-way conversations and group forming.

· Expect two-way conversations; embrace them. The top-down one-way communication approach is over. Don’t try to employ this communication in a social network.

And this all only the touches the surface of where you can go.

What do you think about Shirky’s ideas? Have you found them relevant to your work?

I am just discovering Animoto, and using the program, I created this video highlighting the National Institutes of Health campaign, Be the Generation. The campaign aims to increase awareness and support for the creation of an AIDS vaccine, which NIH is working on and currently creating HIV-negative men for clinical trials.

I’d love to know your thoughts on the video.