Can a game app lead to better health?  The Robert Wood Johnson Foundation thinks so.  They’ve announced a competition challenging developers to create game apps that “generate useful health care data to improve health and health care.”

The competition will be conducted in two phases. Phase One is an “open ideation phase” where interested developer teams can submit app concepts. From there, the top five teams will be awarded $5,000 to build upon their initial proposals and create working game apps.

What’s at stake?  The developer of the winning game app receives $100,000, while second and third place winners earn $50,000 and $25,000, respectively.  Winners will be announced in September 2013, with the first place winner honored at the Health 2.0 7th Annual Fall Conference.

The deadline for submission is February 22, 2013.  Learn more and register for the challenge here.

Last month, I spoke once again at the Health 2.0 conference in San Francisco.  The video of my presentation is now online.  Here’s a snapshot of what I covered in the 6-minute talk:

• The wealth of data shared in a PatientsLikeMe treatment reports (e.g., what fibromyalgia patients are sharing about Cymbalta and Lyrica)
• A suite analytical tools we have to drill down on this underlying data, such as
  • PatientsLikeMeLandscape^TM – a tool to learn more from what patients like you are talking about in the forum.
  • PatientsLikeMeListen^TM – a sentiment analysis of keywords in those forum conversations
  • PatientsLikeMeInsights^TM – our query engine that dives deeper into the data (e.g., weight gain in Cymbalta/Lyrica patients)

As I note in my presentation, there are a lot of caveats to what I have up on the screen.  We as an organization believe in being careful about throwing terms around like “evidence.”  So what you see in this video is not evidence – it’s the first look at some of the data we have to work with and what we can do with it as we continue on our path to create evidence.  With no uncertain terms, though, what you see here is the beginning of the insight we can generate around clinical outcomes of patients and the real-world impact of treatments.

A few weeks ago, I gave a 30-minute talk about PatientsLikeMe at Bil:Pil, the unconference following TEDMED in San Diego (where Jamie Heywood made an amazing presentation, by the way). The topic of my presentation was “A Healthy Mix with an Economic Twist.” I focused on how difficult it can be to make money in the Health 2.0 space because companies must balance patient needs with commercial reality to keep the doors open.

Central to that discussion for PatientsLikeMe are our core values. As I’ve discussed many times before, it is our imperative to keep patients first in all of our endeavors, including building the revenue base for the company, because we must honor the trust patients give us in sharing their deep health information.

There was a mini-flurry of Twitter activity during the talk as well. Check out some of the thoughts from leaders in the space to the right.

What do you think? Video from Bil:Pil will be available in the coming weeks. Kudos to Jonathan Sheffi and team for organizing a great unconference!

We are excited to present the first member video for the PatientsLikeMe Mood community and what better way to kick it off than with one that represents the voice of the patient.

In June, we launched The Patient Voice with the inaugural report on inpatient therapy, a topic often discussed by our Mood community members.  At the time of the report, 63% of patients on our site reported an efficacy of “moderate” or “major” for inpatient therapy.

Many patients have already benefited from the information in the report, so we decided to create a video that highlights our patient members’ tips and experiences. Check it out on our YouTube or Facebook page, but if you visit the latter don’t forget to become our fan!

If you want to know more about patients’ experiences with inpatient therapy, you can download the full report here. It includes even more tips and personal stories, interesting facts about the PatientsLikeMe community and a worksheet that will help you make the most out of your hospital stay. Of course, none of this would have been possible if patients like you were not willing to share. We are always eager to hear what you have to say, so please share on.

Once again, special thanks to our summer intern, Shane, for his work on the video!

Though documented as long ago as the early 1800s, medical breakthroughs in Parkinson’s disease research have been slow in coming.  That’s why PatientsLikeMe continues to get involved in the research process.  With our new genetics engine for Parkinson’s disease, patients now have a way to share information about their genetics and find others with the same genetics as them.  As part of our commitment to supporting genetics discovery, PatientsLikeMe recently partnered with 23andMe, aiding them in their research effort to get 10,000 Parkinson’s patients for a groundbreaking research study.

Most of the time, people don’t know what causes their Parkinson’s disease.  It could be due to genetic factors we haven’t identified yet, environmental exposures, or maybe even something else completely.  However, there are some known genetic causes of Parkinson’s disease. Sometimes different genetic mutations have different disease characteristics, so there’s some benefit to knowing what mutation you may have.  For example, different genetic mutations can result in an earlier or later onset for Parkinson’s disease, some have a milder or more severe disease course, and others have a higher or lower chance of dementia.  Knowing your genetic status could help you plan ahead, especially if you have a strong family history of the disease.

The 23andMe kit tests for one genetic mutation that can cause Parkinson’s disease – LRRK2 G2019S.  The chances of having this mutation vary with your ethnicity, and not everyone with the mutation will get Parkinson’s disease. However, some studies claim that LRRK2 G2019S is responsible for about 5-6% of all familial cases of Parkinson’s Disease and 1% of sporadic (randomly occurring) cases of Parkinson’s disease.

We are working to include as much meaningful genetics information in the PatientsLikeMe Parkinson’s community so that you can make the best decisions collaboratively. For those PatiensLikeMe Parkinson’s community members taking advantage of the 23andMe offer, we encourage you to upload your genetic information on your PatientsLikeMe profile so we can continue to expand our understanding of genetics and Parkinson’s in the context of individual patients.  If you go to your 23andMe account and find that you have the LRRK2 G2019S mutation, you can add it to your PatientsLikeMe diagnosis history.  Once you have entered your genetics to your profile, you will be “findable” by other “patients like you” with the same genetics. The PatientsLikeMe research team is excited about learning more about Parkinson’s with your help. Sharing information will help us all learn as much as we can about the disease.

Despite some recent happenings in the news, we’re here to assure you that health 2.0 is still very much alive.  Here’s our recent announcement about our new partnership with 23andMe.

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PatientsLikeMe, the first community-based personalized medicine platform for people with life-changing conditions, and 23andMe, the world’s leading personal genomics company, announce a partnership today to help people with Parkinson’s disease.  PatientsLikeMe is teaming with 23andMe on its effort to recruit 10,000 people with Parkinson’s for a massive study of the disease, and give patients a way to learn more about their personal genetics.

“Today, technology is moving faster than the research establishment,” says James Heywood, co-founder and chairman of PatientsLikeMe.  “We are excited to see what happens when you give patients the ability to see variations of their disease and compare it to their own, while enabling them to easily define their personal genomics.”

More…

This month marks the 3-year anniversary of our flagship ALS community.  While there have been so many exciting milestones we’ve reached in that time, we’re always looking at ways to bring new insight to this disease.

It’s exciting times for PatientsLikeMe!

Today, our new community for people with fibromyalgia goes live on our site.  Spread the word!  Let’s bring a new level of understanding to this disease in a way that nobody else can.  Next week: a blog series regarding this new community and the people in it.

If you haven’t checked out the most recent issue of BusinessWeek yet, you’re in for a treat. Senior writer Catherine Arnst takes an in-depth look at how PatientsLikeMe is “changing the nature of drug research and the practice of medicine” in her article -  “Health 2.0:  Patients As Partners.”

Finally, turn your channel to CBS Evening News with Katie Couric tonight to see PatientsLikeMe featured in a segment with medical correspondent Dr. Sanjay Gupta.  Part of a week-long series about patients finding medical information online, our piece will include interviews with a patient member, as well as our founders.

We have lots happening, and lots more to come!  Stay tuned…literally.

A few nights ago, I was honored to give a keynote at the second Health 2.0 Northeast conference held right here in our Cambridge, MA backyard.  It’s exciting to see old friends and new emerging start-ups coming together to try and make a dent in the $2 trillion industry that is healthcare in the U.S.  In the world of Health 2.0, we have a lot of great opportunities to impact healthcare in a positive way, including shaking things up and putting patients back at the center.  With so many new and promising companies emerging in the space (many in attendance at the Boston event), we have to start thinking about what happens next.  How can we really make change, and what changes need to be made?

I believe we, as the eHealth community, need to focus on two major goals:  1) solve patients’ problems, and 2) create business models that allow us to do #1.  The PatientsLikeMe business model is straightforward.  We build online communities where patients share structured information about their disease to help themselves and others.  In turn, we make money by selling that data.  We are open with our patients about how and why we sell this data (and specifically what data we sell).  They understand this exchange and they’re all for it. “Sell, sell, sell” someone recently wrote in a discussion about our business model.  Why?  Because they know our goal in selling is to help pharmaceuticals companies, medical device companies, healthcare providers, and others in the industry learn more about patients.  We’re giving those companies the kind of information that can help improve the products/services they’re creating for patients.

I don’t want to prognosticate about what types of business models will work for all Health 2.0 companies as the industry evolves (because, ultimately, this is an evolution).  It’s up to each company to figure that out.  I do believe that there’s no wrong path when you keep both those goals in your sights.  Help patients, and create business models to do that.  Moving forward as a company and as an industry, that’s exactly what we need to do.  Now let’s get back to work…

Last week, PatientsLikeMe presented a keynote address at the inaugural Medicine 2.0 Congress in Toronto, Canada in front of 200 researchers from 20 countries. A new, annual international conference on Web 2.0 (social web) applications in health and medicine, this year’s event was centered around the theme: “Building Virtual Communities and Social Networking Applications for Patients and Consumers.” You can view the entire conference proceedings online.  The event is organized by Gunther Eysenbach, MD MPH, who is the editor and publisher of the Journal of Medical Internet Research, where Jeana Frost and I recently published our paper – “Social Uses of Personal Health Information Within PatientsLikeMe.” 

This was a great opportunity to update the research community on how our patient members are engaging in data-driven discussions about their health.  In my presentation, I gave an overview of the site, summarized some of our published research results, and provided examples of how patients are using our forum and profile comment tools to better understand their own and other’s experience of symptoms and treatments.  What really impressed this audience is that PatientsLikeMe is delivering the best of what “medicine 2.0″ can potentially deliver to the healthcare consumer, and patients are using it.  It’s very powerful for others to see how patients are talking with one another about treatment and symptoms experiences (supported by data in their profiles) to achieve better living.  This is exactly what can happen when we put “Patients First,” and give them a community to support the right interaction at the right time.  Our patient members today feel empowered to take back their health, and this kind of commitment will lead to better research, better healthcare and better quality of life.

Much has been made about the potential for viable businesses in the health 2.0 movement. In short, these articles and blogs (among others) openly and appropriately question the long-term viability of the space:

• Seattle Post-Intelligencer
• Wikinomics Blog
• Chilmark Research Blog
• IHealthBeat
• San Francisco Chronicle

Are they right? That answer is unclear, but they are right to ask. In our spirit of openness at PatientsLikeMe, we’re going to share some of our experiences as we evolve our commercialization strategy.

In order to give context to the discussion, however, we want to share our corporate values. These values shape our lenses so when we have partnership opportunities, we see 20/20, and avoid color blindness, i.e. only seeing green.

Honor the trust patients place in us
Simply stated, this means “Patients First”. Patients trust us with their most valued health information and share it with people they believe have the same collective goals. We can’t overestimate the trust we’re given.

Openness
Per our Openness Philosophy, we believe that sharing health information is good. Why? Because sharing will drive massive change in healthcare.

Transparency
No surprises. Our members shouldn’t be surprised by any of our steps, especially in business development. We will disclose all of our partnerships on the site.

Wow!
When people see our site, we want them to think, “Wow!” Achieving our vision takes flawless execution and understanding of patient needs.

With these core values in mind, we attempt to match the needs of our patients with the goals of our partners. If the two are misaligned, then we pass on the deal. In fact, we have passed on dozens of opportunities because they weren’t aligned with our core values. We must embrace a high ethical standard because patients share data with us that would historically be held private—not just for their own benefit, but for that of others. Since they’re selfless, we must consider that selflessness when we enter into potential partnerships. If it doesn’t feel right, it’s not right.

Here’s an example of a deal we passed on. A provider directory service approached us about adding their solution onto our site. Patients need access to providers in their areas, right? The solution would be branded to PatientsLikeMe, and be fully integrated with the look and feel of our site—and with no upfront cost. So far so good.

As in all deals, the devil’s in the details. This company offered an ad-based revenue share model such that ads would be served as part of the solution on our site. The pitch was that this module would help to “monetize our community”.

People join PatientsLikeMe to share real-world information about their experience with their disease. They seek answers from each other; tricks that can help them have a better quality of life everyday. They share their data with the hope of providing a leading body of research that can advance the knowledge of the disease. If we were to work with this partner, the advertisers’ content would appear on our site without being subjected to the scrutiny of our core values. Essentially we would be getting paid to “look the other way” as any company willing to pay to promote their products gets back door access to our community. Patients entrust us to provide a safe environment for information sharing and to preserve the sanctity of our community. This deal didn’t feel aligned. So while we like the idea of a provider directory solution, we politely declined the opportunity.

Perhaps we’re not maximizing potential revenue for our business. Some of these deals may have net us a tidy stream of cash. It’s our belief, however, that endeavoring to solve the problems of disease through insight and information will yield demand for our products and services eclipsing that of misaligned options. Our core values wouldn’t be real if we weren’t principled in how we design our business. So we look for partners who are driven to advance knowledge in the disease and improve the day-to-day lives of patients. This may be a slower path to profitability, and one less traveled, but we believe it’s the right way to build PatientsLikeMe.

PatientsLikeMe is proud to be at the forefront of the Health 2.0 movement. What’s Health 2.0 you ask? It’s all about revolutionizing healthcare through new, web-based tools, search functionality and communities. As a result, patients are able to communicate and exchange information in ways they never could before.

No wonder Matthew Holt and Indu Subaiya, organizers of the annual Health 2.0 Conference, list PatientsLikeMe as one of the five most exciting Health 2.0 companies. In a recent interview for the eDrugSearch.com Blog, Matthew said, “[PatientsLikeMe is] the best example of a combination of a really useful community and tools making a significant difference in the lives of people with serious debilitating diseases. You can literally drill down and see people in exactly your situation, on your drugs, and see what did or did not work for them.”

We’re delighted by this recognition, which only bolsters our determination to open the healthcare system further. We know the powerful benefits of sharing treatment and outcome experiences – and pretty soon, the healthcare industry will too!