The Value of Openness: The PatientsLikeMe Blog

Members of PatientsLikeMe interact a number of ways: viewing profiles, reading treatment and symptom reports, and posts in our forums. In contrast to many of the most heated arguments on the internet (politics, religion, Star Trek…), the discussions on PatientsLikeMe have a tangible impact on people’s lives. Patients with a chronic condition often spend many hours at their computer, and the online communities they belong to are as much a part of their social world as neighbours, church, or even family.

Whilst there is no perfect solution to moderating a forum, we’ve tried to write down some of our collective knowledge. We hope it might provide some insight into our philosophy and may even be of use to others who moderate their own communities.

Reconciliation, not resolution: What if your users start an argument, do something inappropriate, or are hurtful to another user? First off, it’s important to recognise that what you say sets the tone, and scolding a user in public for a misdemeanour can be incredibly frustrating for them. Nobody thinks of themselves as unkind or inconsiderate, and embarassing them in this way will only make them more entrenched and possibly even disruptive in the future. Much better to send a discreet private message “behind the scenes” and let people fix their own mistakes so that they know they can stay here even if they’ve messed up (which we all do). We’ve seen users spitting blood at one another only to apologize a few days later and genuinely mean it, often forming much stronger friendships as a result. Contrast that with a temporary ban or an admin-imposed sullen handshake; in the long-term that solves nothing.

It’s about community, not answers: A common temptation is to provide exhaustive answers to every question posed. Although this might provide a good answer for the users, it sets up a dynamic: ask a question and it will be answered by the “proper authorities”. A general bit of guidance would be to say that whenever you see a question in need of answering leave it for a day or two before responding. That way you give another user the opportunity to answer it.

It’s a job, not a hobby: Moderating a forum is about being a professional, not a participant. It’s important to set boundaries for your own behavior and recognize how other users (who are nothing like you) might interpret it. For instance, I may have, on occasion, said a naughty word in public. In general though I tend not to curse on forums because I know it would upset some of our members and perhaps affect the way they saw me. It’s not just about the established veterans who would know I was fooling around, it’s for the newbies who have just come in through the door and want to know what this place will be like for them. If a post winds you up and makes you annoyed, feel free to write a lengthy, bile-filled diatribe of your own. In Word. Then delete it, let the post sit there till tomorrow, and come back to it in the morning.

Aspirations, not rules: In our community, we took an intentional stance not to make rules. If you make rules, rules are broken, and broken rules require consequences. That requires authority and enforcement, not things we’re keen to welcome into our community. Instead, our forum has a code of conduct which states what ideal members are: Ideal PatientsLikeMe members:

• Ask questions to help themselves and other members learn about their condition
• Welcome newcomers to the community
• Keep personal information up-to-date, such as disease progress, symptoms, and treatments
• Share their opinion with others in a considerate way
• Respect confidential information and don’t transmit other users’ information outside the PatientsLikeMe community
• Enjoy healthy debate on the forum but stick to the argument rather than making comments directed at an individual user
• Check in on other users, make sure they’re OK and help them to keep their profiles accurate and up-to-date
• Share personal experiences without trying to provide medical advice
• Give feedback to the PatientsLikeMe Team about potential improvements, questions, or comments about the site

Does it work? Well, we’ve been running for 2 years now, in which time we’ve had 15,000 registered users, 100,000 + posts and 13,000 threads posted in our forums. Fortunately, we’ve only ever had to ban a handful of people. For the most part, if a group of users have had a heated argument about something, we now have a strong enough self-regulating ecosystem that it usually sorts itself out in a matter of a few hours.

Which means we can focus on what’s really important to our users: improving their health outcomes.

Yesterday Naumi Haque of the Wikinomics Blog referenced PatientsLikeMe as part of a bold prophecy regarding viable business models for social networking companies, particularly Facebook.

First, we are honored that Wikinomics found our business model compelling given our decision to forgo an advertising-based revenue stream at this time. While Facebook is a pure-play social network (and defines the space), we are a personalized medicine platform with social networking components. The differences between our companies explain the differences in business approaches.

How? Social status on Facebook (and other social networks) relies on the number of friends one amasses as well as the diversity of activities in which one participates. Status on PatientsLikeMe, however, is conferred to each patient by how much data one shares with the rest of the community. We employ a star-based incentive program for patients to keep their data up to date. A three-star patient shares a diagnosis date, is current with outcome, treatment and symptom information, and has provided a certain amount of historical data. This deep data sharing provides credibility to the patient for all activities on the site (forum posts, private messages, treatment and symptom experience, etc.). Every interaction is dynamically linked back to a patient’s profile through our “patient icon” (see right) that graphically describes the patient’s current status with the disease. In essence, sharing data gives patients our version of “street cred”.

Since data drives the activity on our site, so must it drive our business endeavors. We are decidedly not an eyeballs play and will likely never reach the stratospheric numbers Facebook boasts in total members. So advertising isn’t as compelling an option as a revenue stream. Our goal, however, is to create new knowledge from the shared experiences of our patients. We won’t need 50 million people to participate to achieve that goal. We sell this deep information (anonymized) to companies that are most aligned with the needs of our patients (life sciences companies for treatments and health plans for health management).

It is true, though, that the more members we have, the more insight we’ll be able to derive about the course of disease—and maybe figure out novel ways to change that course. Patients already have many of the answers. We invite people interested in changing the course of their disease to join PatientsLikeMe.

PatientsLikeMe was a proud sponsor of the 14th Annual Parkinson’s Unity Walk in New York City this past Saturday (April 26, 2008). Jeff Cole, Kate Brigham, Maureen Oakes and I (Lori Scanlon) were all onsite working at our sponsored booth. The event, which raised more than $1.3 million in donations this year, brought together thousands of people with Parkinson’s, their families and friends, support groups, non-profits and sponsoring organizations — all dedicated to advancing research and helping find a cure.

I said this onsite and I’ll say it again: The energy at the event was absolutely intoxicating! In addition to meeting hundreds of people who stopped by our booth to learn more about PatientsLikeMe, we were thrilled to finally meet some of our very own Parkinson’s Community members (and their families) face-to-face for the first time.

“Unity” is the perfect word to describe this event. We got to literally see thousands of people in the same place with the same goal, and it was nothing less than inspiring. We got to meet our members, who not only share their health information and experiences so openly on our site, but also opened their arms to welcome us “in”…it touched us all truly and deeply. We got to “feel the love,” as our members wore badges to represent those members who couldn’t be there. We then came home and read forum posts from the many more members who were at home watching us on the webcast and cheering on the walkers.

Here are a couple of many photos from the Unity Walk. Please take it all in. There was sunshine. There was energy. The smiles. The laughs. The love. The purpose. Can you feel it? Can you feel the (comm)unity? Good. Now, please pass it on…

One of the things we’re most proud of at PatientsLikeMe is our ability to rapidly carry out research. There are some obvious benefits online: patients can can take part whenever they want, take as much time as they need (often using assistive technology), and are more likely to be open and honest about subjects that could be embarassing.

We recently published a paper in the European Journal of Neurology that’s a great example of this. For many years doctors have known that a small number of patients with ALS (~5%) develop frontotemporal dementia, which causes personality changes, unusual behaviour, and severe cognitive problems. A larger proportion (~33-50%) suffer much milder cognitive problems, such as getting words “stuck on the tip of their tongue”, finding it difficult to multi-task, or difficult to plan complex sequences of events like planning a vacation. A recent review in Lancet Neurology gave a thorough run-down of the literature, the ALS Association has published a guide for families, and there have even been two conferences held just on this topic.

Despite this, our study of 247 ALS patients found that:

• 85% of patients were told they might experience problems walking
• only 11% were told they might experience cognitive change
• The patient literature around ALS continues to promote the myth that “the mind remains unaffected” in ALS.

Doctors may feel that they shouldn’t burden families with knowledge about a symptom that may never affect them, but we found that most patients and carers would have liked to have been told. It’s not even clear that witholding the information had much effect anyway, as many respondents reported having found this out through other sources, regardless of what their doctor had told them. One caregiver told us:

My husband… had uncontrollable crying the last few months of his disease, as well as frontal lobe confusion. This was not ever discussed with the neurologist, but when I called about it I was told that it does happen sometimes with this disease… I called the doctor to be told it sounded like the frontal lobe thing. I think doctors need to do a better job educucating the patient throughout about all possibilites of what could happen so the patient’s caregivers aren’t so helpless.

Whilst we understand that healthcare professionals are doing their absolute best to manage people’s expectations and fears about their disease, it seems clear that when it comes to patients accessing information about their disease, the genie is out of the bottle. Now that doctors are no longer the sole conduit of specialist knowledge we need to have a dialogue about how to help patients get the best outcomes.

Recently, PatientsLikeMe opened a community for people affected by HIV, our first outside the area of neurological diseases. Since then, we’ve gained some 700 patients in the community, including a member who goes by the name of “BrightonBear.” His experiences are quite unique as he’s been living with HIV for more than 25 years and has seen first-hand many of the tremendous changes that have happened in that time. Through my conversations with him, I’ve had to revise a lot of my views about HIV.

Part 1

Part 2

A few years ago, I did my PhD on the psychological impact of Amyotrophic Lateral Sclerosis (ALS, or more commonly called Lou Gehrig’s disease); a mysterious and rapidly progressive condition with no effective treatment and little public recognition. In examining other disease areas, I would sometimes look over the fence to other conditions to get a glimpse of what the future could be like. My hope was that one day, with a lot of work, we could replicate in ALS the great medical success story that has been HIV. In just 25 years, survival time has gone from being very brief to being effectively normal. The mechanism of the virus is well-understood, and as long as people have access to treatment, the problem is solved. Right?Through talking to BrightonBear I’ve learned that things are rarely so simple! Whilst anti-retroviral drugs have undoubtedly been a great scientific discovery, they require an almost obsessive level of compliance to avoid the development of drug-resistant strains. The problem is: if a drug regime doesn’t fit with a person’s lifestyle (say he/she does shift-work for instance), it’s going to be very hard for that person to stay compliant. It’s also worth pointing out that many people with HIV never feel sick, except for the side effects of the medication. So, here you have people living with HIV who feel well, but are being told they have to be 100% compliant with meds that made them feel nauseated, fatigued, or even change their appearance. If they decide to take a break from their meds for a while, they may feel much better as they’re no longer experiencing the side effects, but they risk developing drug-resistant strains of the virus whilst they do so. This is a very tricky and counter-intuitive balance to maintain.What’s really interesting to me as a psychologist though are the psychological issues that affect people with HIV. A positive test could have a massive impact on past, current, and future relationships. It can cast a cloud over happy memories of past relationships, introduce issues of trust and intimacy in current relationships, and present a real challenge in forming new ones. When I was first researching HIV, I was surprised to come across special dating sites just for people with HIV; where people could find others who would not be as judgmental or prejudiced about what it’s like to live with the virus. Today, people are turning to social networking sites. AIDS.gov is also hosting a blog series about how people with HIV and AIDS are using online communities to connect with one another. PatientsLikeMe is profiled on the blog this week, along with interviews from some of our members.

The message that comes across to me most strongly, however, is that HIV is still here. Sometimes it feels like the media has decided that HIV is a story that’s been resolved; science found the cure, so roll the credits and let’s all go home. But, in my opinion, we need to shift our views and understand that whilst we’re no longer confronted by images of people dying from HIV, the people living with HIV still need our support. I’m very grateful to BrightonBear for sharing his experiences with us, and helping me and many others understand that the story of HIV is far from over….

This month marks the two-year anniversary of our flagship ALS community. It’s amazing to reflect on what we’ve achieved in just two short years. Not only did we build the world’s largest treatment and outcome sharing communities for ALS (1,800+ patients), MS (4,500+ patients) and Parkinson’s (1,300+ patients), but this year we began evolving into the powerful research platform we always envisioned we could be.

At the heart of this research initiative are our new community reports, which analyze the makeup of our patient communities. In January, we released our first MS Community Report covering factors such as first symptoms, age of diagnosis, disease type, etc. Recently we released our ALS Community Report, with the Parkinson’s Community Report to follow shortly. You can find the much-anticipated results on the blog as well as the ALS forum.

But that’s just the beginning. Your commitment to collaborative learning has now driven our evolution to the next level. On March 7th, we launched the ALS Lithium Study. As co-founder Jamie Heywood wrote in a recent blog entry, “Today, we allow patients to begin to answer how to treat ALS.” What could be more central to our mission than that? We are delighted to collaborate with Humberto Macedo, a patient, and Karen Felzer, PhD, whose father has ALS, on the study. “Together…we will run the first real-time, real-world, open and non-blinded, patient-driven trial,” wrote Heywood.

The question at hand is: Does lithium slow ALS? With almost 150 patients participating to date, we already have more than eight times the number of participants as the most recent published study about lithium and ALS. Stay tuned as this exciting and unprecedented study continues. As always, thanks to everyone - whether involved in the study or not - for sharing your treatment data. You made this study possible, and we intend for it to be the first of many across our communities. The age of patient-led research is here!

Finally, we are thrilled to announce the March 23rd launch of our beta community for Mood Conditions, which coincided with the New York Times Magazine article, Practicing Patients. If you know anyone affected by Mood Conditions such as depression, bipolar disorder, obsessive compulsive disorder (OCD) or anxiety, please invite him or her to join PatientsLikeMe today.

In one of the greatest honors in our young company to date, PatientsLikeMe was featured in today’s New York Times Magazine. The article, entitled Practicing Patients, appropriately discusses the pros and cons associated with sharing data-rich personal health information in an open community.

PatientsLikeMe seeks to go a mile deeper than health-information sites like WebMD or online support groups like Daily Strength. The members of PatientsLikeMe don’t just share their experiences anecdotally; they quantify them, breaking down their symptoms and treatments into hard data. They note what hurts, where and for how long. They list their drugs and dosages and score how well they alleviate their symptoms. All this gets compiled over time, aggregated and crunched into tidy bar graphs and progress curves by the software behind the site. And it’s all open for comparison and analysis. By telling so much, the members of PatientsLikeMe are creating a rich database of disease treatment and patient experience.

With amazing patient successes balanced by medical leaders’ skepticism, author Thomas Goetz strikes a critical chord within the current healthcare debate. Is the American health system broken? Can patients fix it through aggregation of collective experience? Are patients to be trusted to report their own health conditions? What does PatientsLikeMe mean for the medical establishment?

PatientsLikeMe is a tool that allows patients to manage their disease with a sophistication and precision that would have been unimaginable just a decade ago. The 7,000 members of PatientsLikeMe, in other words, are beta testers — they may be the vanguard of how we all will care and treat our résumé of chronic diseases.

The article cites the PatientsLikeMe Openness Philosophy; the manifesto that draws our company line in the sand. Openness can lead to better outcomes and accelerate research like never before. This is our goal for PatientsLikeMe. This isn’t health science fiction. It’s happening today with the help of thousands of patients.

So read the article–and join PatientsLikeMe–to see where you stand.

PatientsLikeMe was born of a passion to provide the best tools for patients to participate in their own care, share experiences and change the way medical research is done.Thanks to our members and the dedication of our growing team, our first community, ALS, has now been open to the public for two years! The community includes over 1650 patients, the U.S. members represent over 4% of all the ALS patients in the States.

Over three quarters of our members have entered substantive information about their treatment history and status. Each time a member adds information, that information benefits how other people care for themselves and heightens how we as a community contribute to medical knowledge and drug discovery.

Already we have published exciting findings from our community. For example, hundreds of ALS patients completed Paul Wick’s survey on Excessive Yawning and the results were published in a psychiatry journal (Acta Psychiatica Scandinavica). Another exciting development in ALS is first real time drug study - on the use of Lithium in ALS. More published and presented research will soon be featured on our blog and in a new section on the site. Each project demonstrates how we, as a community, can conduct research quickly and easily to accelerate the pace of gathering and disseminating new knowledge. SO THANK YOU.

To show you how the research process works and to celebrate our second anniversary, we have put together a report on our ALS community. In it we observe that the community is a good one to study in that it looks a lot like the ALS patient population at large. As is true for ALS generally, there are 3 men for each 2 women in the community and mostly sporadic cases (8% hereditary, 92% sporadic). And, PatientsLikeMe members experience all types of onset with the most common being leg and arm onset (39% and 37% respectively). The only real difference is that site members are a little younger than the average (48.4 at onset on the site compared to 55 generally). In the report, we also looked at how different ways to better understand ALS and connect patients. In the figure below, we look at the relationship between age at onset and onset type. Separating each age group, we see whether different types of ALS present themselves at different times of life. This can contribute to scientific understanding of the disease. Arm onset appears to affect slightly younger people than bulbar and leg onset. Also, when each number in the chart is a link on the site, it will help you locate others like you and of interest to you. See the next figure. We also report early stage research of our own. Specifically, we look at how patients are utilizing health services and how our members with different types of onset are doing over time. One surprising finding is how long some people report between experiencing their first ALS symptom and receiving a diagnosis. In the figure below, the most common length of time between onset and diagnosis was 12 – 18 months. There are also a number of patients who did not receive a diagnosis for several years. We are going to do some more research into these results.

Lastly, we begin to look at how ALS differs by onset. We see from our user reported Functional Rating Scale that bulbar onset patients experience a faster decline than users with arm or leg onset. People with bulbar onset experience the same level of decline in 8 months as leg and arm onset patients experience in 16 months.

Through member participation, we are gathering the information we need to better understand the course and characteristics of ALS. At the same time, we are creating methods to use patient supplied data to discover and evaluate the effects of new possible treatments. If you are an ALS patient or caregiver, please take a look at the full report (Note: you must be a registered user).

by James Heywood

Update (March 7, 2008):  PatientsLikeMe ALS Lithium Research released.

Does it work? 
On February 12th of this year, Proceedings of the National Academy of Sciences (one of the leading science journals) published a paper entitled — Lithium Delays Progression of Amyotrophic Lateral Sclerosis. After 10 years researching ALS, I believe it is fair to say this paper includes the most promising suggestive set of data from a clinical trial ever published. I say “suggestive” because there are many flaws with both the information presented and with the publication process itself. These flaws make it so that patients and their doctors are left trying to draw conclusions about the use of Lithium to treat ALS, without actually having any realistic confidence in the data or its meaning.

For a patient, there is genuine risk either way. Lithium is not a harmless drug, and, although it is widely used, it can have significant side effects if it is not monitored properly. In addition, the reality is that in several of the last clinical trials in ALS, including minocycline and topiramate, the patients in the treatment group did worse than those in the control group. So, fears about the risk of an unproven drug are well founded. However, there is also the risk of doing nothing. If the paper turns out to be even half true, the effect on the progression of the disease could be dramatic.

We also must consider the consequences of waiting for more information. For someone with a life expectancy of several years, the consequence is obvious. Unfortunately, the harsh reality is that the traditional medical research system will not provide any better data to patients for at least 2 years – that is, 6 months to start a trial, 15 months of evaluation, and 3 months to share the data. In fact, 2 years is being optimistic, if truth be told. History teaches us that it will most likely be much longer.

History also teaches us that patients sharing stories with each other will not answer the question alone. Chinese stem cells, herbal supplements, nutraceuticals — all have been discussed extensively on the internet with some claiming cures and some describing great harm; yet we have no definitive answer. Despite the thousands of postings, very little knowledge has advanced the treatment of ALS, and patients are still left unable to make effective treatment decisions.

We can and will do better
PatientsLikeMe was built to solve this problem and accelerate the transfer of knowledge about what works and what does not. Today, PatientsLikeMe has data on the progression and history of more than 1600 ALS patients - twice the number in the largest ALS trial in history. Even before the trial results were published, 50 patients worldwide who had elected to start taking lithium, in collaboration with their doctors, have been tracking their progression and blood levels on PatientslikeMe. This is more than twice the number of patients participating in the trial itself! We have data on historical forced vital capacity, the ALS Functional Rating scale, and a full symptom battery for most of the patients who have started, as well as for all the other non-lithium users in our system.

PatientsLikeMe is committed to solving this problem. We are collaborating with Humberto Macedo, a patient, and Karen Felzer, who’s father has ALS, to recruit all patients taking lithium. Together, with all the patients involved, we will run the first real-time, real-world, open and non-blinded, patient-driven trial. We believe we will have the power, within months, to begin answering the question of how much lithium modifies the progression of ALS. Unlike a blind placebo control trial, we are watching the use of this drug in the real world, and because of the number of patients and our system’s sophisticated data modeling, we can determine the significance of each reported change in each patient as he/she deviates from his/her predicted course. There are many risks to our approach, patient optimism, the placebo effect, uncertain quality, and many other variables will compromise our data. Despite these, and many other challenges, we remain committed to solving this problem.

Our Pledge to ALS Patients
We will use all our shared patients’ data to determine, to the highest predictive power possible, the effect of lithium on ALS patients in the real world. We will share that information in real time with all patients. We commit to displaying that information in a realistic manner that communicates the true confidence and uncertainties it contains. We will build a platform that allows patients, doctors and researchers the ability to drill down into all of the data in the system, to each and every data point, so that they can trust that our analysis is based on what really happened. We commit to engaging in an open and productive dialogue about our methods, so we can all learn to do this better – today and tomorrow.

What you need to do
Regardless of whether you take lithium or not, we need your data. The more patients that share their information, the more power we have to detect the effect of lithium, or any of the other 800 treatments in our system. We encourage all patients, including those who have chosen on their own in effective consultation with their doctor to take lithium, to join PatientsLikeMe and share your data with the world. We do not encourage any patient to start taking lithium. As noted above, all drugs have risks and, in general, ALS patients have experienced more harm than good trying experimental treatments. It is important to note that, either way, you help if you participate, because the more data we have, the more ability we have to answer the question of what’s working.

Realistic Hope
In the 9 years since my brother, Stephen, was diagnosed with ALS, we have been through so many cycles of hope and disappointment. We have tried treatments that turned out not to work, and we have tried treatments that were and remain unproven. Each time, we approach the data with a little more skepticism, as each time before it has been proven to be wrong. Someday a treatment will work. I hope and pray that lithium is the one, but I am realistic given the failures of the past. The realistic hope of PatientsLikeMe is that together we can accelerate the day when we know. We know most patients use PatientsLikeMe because they want to talk to someone like them and support their friends, they use PatientsLikeMe to share their insights; they use PatientsLikeMe, because, without question, we improve patients’ quality of life through the sharing of information. We value that greatly, but we also have higher goals, Today, we start achieving them. Today, we allow patients to begin to answer how to treat ALS, and that will help us answer it for all diseases.

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!

According to a December 2007 iCrossing survey cited by Jane Sarasohn-Kahn in her Health Populi blog “34% of Americans turn to social media for health research.”

Jane points to PatientsLikeMe and others as “proof of the reality of social media in health is alive and well and healing”, and observes that “increasing numbers of people are reaching out to others for more than the kind of support they might have found in the Compuserve health interest groups in the 1980s; they’re finding practical solutions to chronic health challenges”

Interesting reading, especially her response to one commenter that “In the case of info for PatientsLikeMe, the database on drug dosing, quality of life and outcomes throughout the MS cycle is probably richer than any other single source on the globe”.

Over the past seven months of working at PatientsLikeMe, I’ve come to think that the idea of sharing medical and health information is completely normal. Since giving birth to my nearly 3 year old daughter, I have continued to be eternally grateful to other mothers who have willingly and openly shared their deeply personal experiences and advice so readily. There are some unexpected things you have to deal with, and nothing is so helpful as the wisdom of others who’ve been there. Then this December, I had a moment of pause. All of us at the company received a year-end gift of 23andMe’s Personal Genome Service. Here was my chance to find out what my genes have in store for me and to find out what I might have passed onto my little girl. But do I really want to know? And once I find out, do I want share that information?

Well, it took a while to decide and I hadn’t expected that. I realized that deciding to put very personal details about my health, current or future, out into the world is no small thing. I commend each and every person who has chosen to share their information in our PatientsLikeMe communities. I wouldn’t have made it this far into motherhood without the nitty-gritty, honest information that other mothers have shared with me, and I’ve been truly and deeply inspired by the information that people have so willing shared on our site. I would certainly want access to that knowledge and experience if I needed it. But, if I want to have access to that kind of information, then I have to do my part too. So in the end, I decided to spit. Now I’m waiting to find out what my genes have in store for me and my family. Openness, here I come.

Our members are very enthusiastic about the value generated by sharing their information. So much so that recently two of our members decided to don their hard-earned PatientsLikeMe t-shirts and share their experiences using PatientsLikeMe with their local MS support group. They recruited several new members at the meeting and gave more information about PatientsLikeMe to everyone. Our members believe that the more information we share, the easier it will be for patients and doctors to see what’s working for others and for scientists to use the data to develop new treatments faster. This is a great example of patients helping other patients and we love seeing our members share, online and in real-life. Thanks!