by Russ Ward (@russcward)

Can science be crowdsourced? Can medicine take advantage of the knowledge of the masses to leapfrog to advances? Can we use social media tools to cure disease?

These are (increasingly specific) questions about the utility of digitally shared intelligence to improve healthcare – sometimes called “citizen science” (similar to “citizen journalism”). While nobody is nominating Mark Zuckerberg for the Nobel Prize just yet, there are definitely signs that social science is paying off. Here are three.

Where it all began: SETI@home

The idea of taking computer power possessed by the multitudes and combining it for science probably dates back to SETI@home, a program first offered to the public in 1999 to donate their superfluous computing power to the search for intelligent life. Still active, the program works by distributing telescope data out for analysis.

Procrastination for science: Foldit

One of the original and best-known examples of crowdsourced medical science is the Foldit project. It takes the complex process of genome folding, and turns it into an online game. If human players can best computers in figuring out biologically “winning” solutions, this can not only provide immediately faster answers, but can also help researchers teach computers those strategies in order to keep improving the pace of their work – whether assisted by computer or volunteer.

Global symptomatology: Health Tracking Network

While SETI@home and Foldit use crowdsourcing in a more detached fashion, using individuals’ resources to solve scientific puzzles, Health Tracking Network asks for your help by sharing your own medical information. High-level information about your cold or flu symptoms will, they hope, allow better predictions and tracking of these viruses and their paths.

There are certainly many naysayers for crowdsourcing in medicine – including this post by John Mack last year, in which he points out the risks associated with having patients “review” their treatments.

However, there are other examples in which citizen science has sped up the time for experiments to be conducted (including this study on tuberculosis).

To me, the difference is an important one. On the one hand, exploiting volunteer or inexpensive human aptitude for completing small nonlinear tasks rapidly can clearly be efficient and effective. On the other hand, relying on anonymous opinions for quality analysis may not be such a great idea – but I don’t think that’s news to anyone who’s been within ten feet of the internet.

Are you working on any projects that harness the power of the people – be they your clients, your patients, your healthcare professionals, or the public at large – to make medical science advance more rapidly, discover more broadly, treat more accurately or predict more closely?

We had to include this powerful interview in our Year In Review. From E-Patient Connections 2011, renowned Soprano, Charity Tilleman-Dick shares her inspiring story with Pixels and Pills.

If you’ve seen it already, it’s definitely worth watching again.

by Briana Campbell (@MsMatchGirl)

We’ve spent a lot of this year (and last) talking about how pharma is running scared of social media. And we’ve spent some time telling them to just suck it up and do it anyway. And we’ve spent a bunch of time (two years, at least!) talking about how we’re waiting for guidance from the FDA, and maybe, just maybe, once it comes, then pharma companies can jump on the social media bandwagon.

And it’s true. If we wait for guidance, it will be too late. The next big thing will have come along. And pharma marketers will have missed the boat. But let’s talk about something else for a minute.

Let’s talk about some pharma companies that are doing social and doing it right.

Let’s talk about the companies that did not put their heads in the sand when Facebook changed the rules.

Let’s talk about the companies that are putting healthcare out there on social networks, who are using internal guidelines and tools, and are going to end up ahead of the game because of it.

And though there are a lot that people are talking about (J&J, GE, and Boehringer all come to mind), we thought we’d reach out to our Twitter community and see what they had to say about it.

So we sent out one simple Tweet:

What pharma companies are doing social *right*? Who stands out in your mind?

— Pixels and Pills (@pixelsandpills) December 20, 2011

And within seconds, Allison Blass tweeted back at us, with her response.

@pixelsandpills @toddsiesky and Roche Diabetes! — Allison Blass (@AMBlass) December 20, 2011

Unprompted (we were on the subway!) she went on to say that the team at Roche Diabetes had spent three years cultivating relationships, being honest with their community and letting people speak their minds.

And that means a lot to an e-patient.

What we see Roche doing right is starting an open and honest dialogue with the patients who rely on their products. We see them answering questions, getting involved and reaching out to e-patients who are blogging and sharing their personal diabetes stories. Going so far as to host their own social media summit in June of this year.  They know that their consumers are sharing stories, tips and moral support on social platforms and instead of shutting down and shutting them out, they launched forums for those conversations to continue. And they became part of the conversation.

For a comprehensive list of pharma companies/brands on social media (the infamous deathwatch), head on over to Dose of Digital for Jonathan Richman’s wiki. Are any of them doing social right? Share your stories and thoughts in the comments.

Here on Pixels & Pills, we spend a lot of time talking about the e-patient. About how technology has helped patients become more involved in their own recovery, about how advances in social networks have helped people connect better to those facing the same challenges as they are. We offer advice on how pharma companies can take advantage of these communities to offer services and raise compliance rates.

Recently, MS Lifelines, an educational support service for people living with MS and their families, sponsored by EMD Serono, Inc. and Pfizer Inc. (client of WCG in conjunction with Zemoga), launched a new project, Words 4 MS.

From the announcement:

In order to inspire others through compelling real stories, MS LifeLines asked the MS community to tell its story through four words in a video earlier this year.  Now, you can check out some of these stories from Words 4 MS and share them with friends at http://on.fb.me/ucIogz.

Starting in March, to honor MS Awareness Week, MS LifeLines invited the MS community to submit a video that uses four words to illustrate how individuals feel, what inspires them, or reminds them of someone who helped them through their MS journey.  Now, a video montage of select submissions is available for viewing.  The video features individual stories from people impacted by MS.  You can also go to www.MSLifeLines.com/Words4MS to submit your own video today.

Are you an e-patient? Do you live with a disease, like MS, that affects your everyday life?

We’re curious about how you use technology in your day-to-day life.

Share your thoughts in the comments section or e-mail us at info [at] pixelsandpills [dot] com to apply to be a guest blogger, and share your story with us here on Pixels & Pills.

by Briana Campbell (@MsMatchGirl)

Here’s the question: How do we help people get healthy and stay healthy?

With all the information that’s available, you’d think it would be a no brainer, right? There are warning labels and public service announcements and calories posted at point of purchase. Yet, people seem not to care. When, for instance, was the last time you heeded the calorie count when popping in for a doughnut? And you smokers (I know there are a few of you reading this), do you read the warning label on that pack of cigarettes? I didn’t think so.

The fact of the matter is that it’s hard to get people to change their habits. And whether it is about sticking to a diet, following a physical therapy regimen, or giving up a bad habit, it’s just not human nature to be so easily changed.

Here’s where we start talking about gamification.

We see gamification entering the marketing landscape in so many instances; it would be ludicrous to believe that it wouldn’t touch those working in the health space. In fact, it’s quite possible that this is an instance where those other marketers can take a glance at our community and find some inspiration to push themselves forward

Yes. We know it’s a buzzword. And we know you’re probably so over it. But, lacking better verbiage, lets talk about how game mechanics can help people with just these problems.

A while back, Buster Benson launched Health Month. I actually remember this, as I had a couple of friends participating. And I remember thinking it seemed pretty silly. Being a self-sufficient and stoic New Englander, joining my friends in a healthy living, no cocktails, exercising game didn’t seem like anything I would want anything to do with. Apparently, a lot of people did. People lost weight and lowered cholesterol levels. They quit smoking and stayed quitters. They, for the most part, got healthier. And Health Month is still going strong. In fact, as we spend more and more time living in online communities, maybe it’s stronger.

Which brings us to something I heard about on On The Media quite recently, Superbetter. It “is specifically designed to create “gameful” incentives to help people recuperate physically and emotionally from injury.” On The Media Correspondent Alex Goldman decided to play along for six weeks, while recovering from a traumatic injury sustained while on his bicycle, and blog about it. Superbetter looks like a really meaningful way to recover, but looking at Goldman’s blog, it also looks like it takes a lot of work.

Here’s the thing I didn’t get when I watched my friends jump on the Health Month bandwagon all those years ago – humans, as social animals, are only boosted by the support of others. And, that support can be competitive of nature. Playing against yourself, your colleague or your friend, it pushes you to do more. To work harder. To be better.

We know we’ve just scratched the surface here. Is there a gaming platform that you see leading the way when it comes to helping people to lead healthier lives? Share your thoughts in the comments section.

by Sven Larsen

Are you ready to make a life-or-death decision?

Most decisions aren’t as dramatic as the one the main character faces in the movie Sophie’s Choice – deciding which of her children will live or die at the hand of Nazi prison guards – but how you approach health care privacy can be the difference between health and sickness.

Privacy as we know it, in part due to social media, is changing. People are publicly proclaiming that they are out of work, like a certain presidential candidate or joined a local weight loss group without batting an eye – sentiments that would have seen out of place for our parent’s generation.

While talking about health maladies used to be unthinkable – Billy Crystal poked fun at his mother for whispering the word “cancer” because she was unable to say it out loud – there’s a growing acceptance with sharing health-related information. Breast cancer is now not only openly discussed, but people wear pink or participate in walks to show support or that they’ve survived the disease. Raising awareness has translated to increased funding, enabling research and progress to be made.

Giving up privacy online when it comes to sharing health-related information is slowly coming into fashion – and it should, because conversation can lead to progress. People used to only share bad news from the doctor among family and close friends, but today more people are using social communities to share or research the challenges they’re facing or gain support from other people going through a similar experience.

There is still some trepidation when deciding how much information is too much. Some of that stems from fear of being penalized by insurance companies, though new legislation loosens the reigns of being judged for a pre-existing condition. Others may be hesitant to share information about an illness lest they be stigmatized by co-workers or their employer.

However, breaking the barriers of online privacy can impact health outcomes. When patients share information, we can use that information to uncover new treatments, receive better care, be more educated and have more productive conversations with our physicians. Communities like Patients Like Me and CureTogether connect people going through the same thing, inviting them to share their condition, how it affects them, the treatment they are receiving and how effective it has been. Not only can this community support be helpful to patients, but analyzing the patient-contributed data can spur new insight and research discoveries.

Greater transparency in health care can also be the right prescription for improved preventative care. For example, educating the public on the connection between healthy eating and lifestyle choices are lower risk of diabetes, cancer and heart disease.

It can be scary to think of giving up your privacy, but we’re heading to a more exposed society. More doctors are moving to electronic records, making data more accessible and easier to analyze and identify patterns or trends. Being able to pair that information with patient observations and experiences can deliver on the true value of digital technology – helping patients make more-informed decisions and live a healthier life.

Is privacy on its way to being a relic of the past? What’s holding you back or what would incentivize you to share private health information?

by Briana Campbell (@MsMatchGirl)

Amit Gupta is dying.

And the tech world is rallying to help.

This makes sense, right, he’s a tech guy, protégé of Seth Godin, and founder of PhotoJoJo, and his community wants to help him. They want to heal him. By any means necessary.

Several months ago, as part of Fast Company’s Innovation Uncensored in New York, Jennifer Aaker, of Stanford Univeristy, gave an inspiring presentation called “The Dragonfly Effect : How Ideas Take Flight.” The presentation was about how one can inspire infectious action. I thought of that talk, as I listened to Seth and Amit being interviewed on The Takeaway.

In her presentation, Professor Aaker shares the story of two other Indian men who, like Amit Gupta, found themselves struck with leukemia. Who, like Amit, needed bone marrow transplants to survive. Between 2006 and 2007, Robert Chatwani found that two of his friends, Sameer Bhatia and Vinay Chakravarthy, had been diagnosed with leukemia. And that without bone marrow transplants, they were going to die.

For a marrow transplant to even have a chance of being effective, the match needs to be near perfect – 10/10. Out of all the people who have submitted samples of their DNA to the National Marrow Donor Program in the US, only 20% of those people are minorities. And only 1% of them are of South Asian descent. So the chance for a match for a person of South Asian descent, the chances of a match are 1 in 20,000.

Read it again. 1 in 20,000.

Robert used his tech savvy and used his social networks to register over 20,000 South Asians, across the US, to add their names to the registry. He found matches for his friends. The full story of how he used social networks in conjunction with traditional media and education to drive registration is embedded below. The ending, is not one of fairy tales.

While Robert registered 24,611 people, and while 266 people were matched, aside from his two friends, there are still few South Asians registered.

And there’s no match for Amit.

So Amit’s mentor, his friend, took it one step further.

Seth Godin is offering $10,000 to the person who’s a match for Amit. Not to the person who donates to Amit, but to the person who swabs and is a match. The hope would be, of course, that the match would choose to donate. The hope is that the possibility of being a match, and receiving $10,000 from Seth, would be enough of an incentive to drive loads of people to register their DNA with the National Marrow Donor Program.

But it raises some ethical questions.

There is a 1984 statute against, basically, buying and selling donations. The idea being that if the rich can buy donations, the poor will never stand a chance.

So, what do you think? Is Seth’s offer of $10,000 to the first to match ethical? In a world as connected as the one we live in, is it wrong to use any resource at your fingertips to help a friend? Would you do it?

If you’d like to register with the National Marrow Donor Program, you can do so here. No matter your ethnicity, it is possible you could save a life.

Started in 1996, Cysticfibrosis.com connects a large audience who can’t come together in real life. Here she talks with Pixels & Pills host Alice An, at Digital Pharma East 2011, about the evolution of the site.

Dr. Kent Bottles explains how patients and caregivers can use social media to connect and organize on a grassroots level at SXSH.

Ed Bennett, Manager of Web Services at the University of Maryland Medical Center talks at Social Media for Social Health about how hospitals are using social media to monitor patient wellness, build support communities and motivate staff and generally improve patient care.