The Value of Openness: The PatientsLikeMe Blog

Without looking too far forward I think we all can see a day where patients have the ability to see how different decisions they make directly impact their health outcomes. I don’t mean in an abstract sense, but rather in a practical way that can change day-to-day decisions about nutrition, exercise, medication choices, and doctor visits.

Aligning Patients and Industry is Possible

Calling the path to getting to that nirvana “the easy part” would be insane until you compare it to trying to create a thriving and responsible business out of this endeavor. PatientsLikeMe is attempting to do just that. The key is being responsible in the decisions we make as we move forward. We must not only adhere to our core values, but also select the “right” partners.

Our partnership objectives are to work with companies dedicated to optimizing health outcomes through the use of real-world, patient-reported data. This means that companies have to value patient experiences, believe that patients understand their health decisions, and regard patients as partners in obtaining the shared goal of improving outcomes.

No Race Car

As easy as that sounds, the devil is in the details. The revenue model of choice for social media is advertising; and as we’ve indicated many times before, there is no advertising on PatientsLikeMe. Our choice is to maintain the sanctity of our user experience without turning our site into a “race car.” This leaves us the option of selling the data that patients provide to us so that stakeholders in health can learn from their experiences.

How Can We Learn?

Data is the key to learning. Translating that data into actionable information for companies that are trying to maximize their profits while still keeping the patients’ interests at heart has been our biggest business challenge yet. Of course, all companies insist that they’re in business to help patients, but in all honesty, there are clear leaders in that regard—organizations that act on the ideals of the company revering their core values as more than rhetoric for annual reports.

We learn as much from these companies during the partnership development process as they learn from us. Should we work with them? Will this company value the same things that we value? Can the patients really be first in their decision-making when faced with tough business decisions? We evaluate potential partners on these parameters as well as their ability to create positive change for patients quickly.

The Goal: Measure Everything For Poeple’s and Industry’s Benefit

One way we measure this ability is how much data is fed back to patients based on partner research conducted on our site. Although some of that information is proprietary, companies that share some interesting nuggets with the patients that supplied the data create a sense of goodwill and encourage greater participation in further studies. Patients feel like they have a direct impact on companies interested in their disease and clearly know that their voice has been heard. To us, that’s what the business of healthcare must be: a responsible dialog between patients and industry focused on serving unmet needs today and creating better treatments and cures for tomorrow.

We aspire to these goals and practice them daily. We continue to turn away business opportunities that don’t feel right. We do this for the patients who put their trust in us; that if we collect the best data on the patient experience, put the patient squarely in the center of their health decisions, and provide unprecedented insight into this experience for industry, PatientsLikeMe will be wildly successful. Our success is the patient’s success.

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.

With 13,000+ members, the Multiple Sclerosis (MS) community is currently the largest community at PatientsLikeMe. Many of our members are just as active online as they are off. There are a countless number of ways for people to get involved in supporting research for the disease, and many patients choose to participate in the thousands of walks and runs that take place year round. At PatientsLikeMe, our members have a voice in research by sharing data about their condition.  However, we also support patients’ decision to take their involvement offline.

Earlier this year, PatientsLikeMe introduced a program to support and sponsor Walk/Run teams. We are encouraged by the success this initiative has already seen since its inception. To date, hundreds of people across all our communities have participated in teams sponsored by PatientsLikeMe, with many of those teams from our MS community.

Want to see some of our patients in action? Head on over to the PatientsLikeMe YouTube page at www.youtube.com/PatientsLikeMeMS and check out some of your fellow patients on the move.  All the pictures from the video and more are also in our Facebook photo album, so check them out (and while you’re there don’t forget to friend us either!) Thanks to all who participated in the program and gave us the material for this first video. Keep on walkin’ everyone!

(Special props to our summer intern, Shane, for editing the video and producing the music for it!)

Today, more than 3,600 people with ALS are sharing their health data and experiences with patients like them.  Recently, we announced our new genetic search engine for ALS patients, designed to help members find others like them, right down to the molecular level.  With 10% of all newly diagnosed ALS patients joining PatientsLikeMe, there are more and more people sharing their health information, including genetic data, to help learn about this disease.

Our research team’s geneticist Dr. Catherine Brownstein recently interviewed Samperio, one of the first members to enter in his genetics on PatientsLikeMe. Later this year, Catherine will be presenting the genetic data shared on PatientsLikeMe to the leading doctors, researchers and thought leaders in the industry to help us all learn more about ALS, and the genes affecting the condition.

Here’s what Samperio had to say about life with familial ALS (FALS) and hope for the future.

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	(Catherine) Thanks for agreeing to the interview!  You recently joined PatientsLikeMe and revealed that you have a SOD1 genetic mutation, the cause of your familial ALS.  When did it all start and how has this form of ALS affected you and your family?
	(Samperio) My ALS is affecting my family [the same] as any other form of ALS. I stopped working, and my wife has to work for both of us. I never had the chance to play soccer or teach my 9-year old son to ride a bike, as I did with my previous sons. I lived the same ALS story with my mother.  She died when I was 18. It took her approximately 10 years, from beginning to end. My symptoms begin at age 40; my ankles were weak. So I was suspicious of ALS. A few years later, I had the DNA exam in Houston, TX and it came positive for FALS. My biggest hope is my family, especially my wife. I know what a burden I am, since I lived that experience with my mother.
	(Catherine) You previously mentioned that your doctor had never seen your genetic mutation before.  How much do you know about your SOD1?
	(Samperio) Almost nothing. The DNA exam was performed 6 years ago. The doctors never told me anything regarding my genetics. I have never met anyone with FALS.
	(Catherine) So now you’ve joined a site with people just like you — even people with the same genetic causes for ALS.  What has been your experience on PatientsLikeMe?
	(Samperio) By joining PLM, I have found so much comfort on all the daily interaction, reading all those people [with the same disease] who share the same interest as I do.
	(Catherine) What is your hope for the future of ALS research?
	(Samperio) As for the future of the ALS research, obviously to find a cure for this disease. I will give all [my] help to the ALS cause.
	(Catherine) Thanks again for sharing, Samperio!

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…

Today’s patient has a loud and strong voice.  At PatientsLikeMe, we hear you.  You’re saying, “I know this disease, I know how it acts in the real-world, and it’s time to share that with others.”

With thousands of patients sharing data and experiences every day on our site, we’ve decided to launch a report that takes what you, the patient, knows and shares it with you, the patient community at-large.  For obvious reasons, we’re calling it The Patient Voice.

The Patient Voice is a collection of wisdom, sentiments and experiences shared by patients like you regarding important issues you face today.  The reports include PatientsLikeMe member tips, suggested checklists and questions to ask yourself, and real-world patient experiences, as well as some fun facts from about the PatientsLikeMe community.

The first report is from our Mood Conditions Community, representing patients with depression, anxiety, bipolar, OCD and PTSD, on the topic of inpatient therapy (or hospitalization).   It’s a topic that comes up quite a bit in our forum, and patients are openly sharing their positive (and negative) experiences with one another.  We’re now sharing some of the positive experiences with you.  Take a look at the free report and let us know what you think.  Share it with your friends and loved ones who might find it useful.  And, please, join the conversation on PatientsLikeMe today.  You have a voice, so let’s hear it!

It’s Parkinson’s Awareness Month. As we continue to spread the word about this condition, we wanted to tell you a little bit more about our PatientsLikeMe Parkinson’s community. Launched two years ago this month, the community has steadily grown to include more than 3,400 patients. Below are some interesting facts about the community, as well as an interview with one of our members (”PokieToo”) giving her real-world experience of living with condition.

WHAT’S IT LIKE LIVING WITH PARKINSON’S DISEASE (PD)?
Meet PokieToo.  A long-time member of our PD community, she tells us how she continues to “look for the sunshine” while “taking 30 pills a day.”   “Out there for the next person,” PokieToo gives us a glimpse of the real-world experiences of living with Parkinson’s disease.

DID YOU ALSO KNOW…

• More than 1,500 of our patient members are 50-yrs old or older
• 140+ of our patient members have inherited Parkinson’s disease (PD), and a handful of people have the less common drug-induced Parkinsonism and Vascular Parkinsonism
• Approximately 10% of our patient members (or 331) are Young-Onset Parkinson’s patients; that is, they report having experienced their first symptom before the age of 40.

How are our members treating their condition?

• Patients are using more than 1200 treatments, including prescription drugs, supplements, over-the-counter medications, medical devices, life-style modifications, therapies, etc.
• The top lifestyle modification reported by our patients is physical exercise;  and walking is the #1 exercise cited.
• The most widely used prescription drugs reported by members are Carbidopa-Levodopa (Sinemet), Pramipexole (Mirapex) and Rasagiline (Azilect)
• Top 3 supplements: CoQ10 Coenzyme Q10, Multivitamins and Omega 3 Fish Oil

What are their major symptoms?

• For more than 1,300 patient members, a “tremor” was their first symptom of the condition.
• The 5 most common primary symptoms reported include: Stiffness/Spasticity, Slowness, Fatigue, Excessive daytime sleepiness (somnolence) and Insomnia.

What are they talking about?

• Some of the top topics “tagged” in our forum discussions to date include specific treatments (like Sinemet, Mirapex, Deep Brain Stimulation/DBS and Exercise), symptoms like tremors and depression, as well as other hot issues like SSDI (Social Security Disability Insurance), the annual Parkinson’s Unity Walk, stem cells, clinical trials and research.

Sharing.  It’s a concept we all learn at a very young age.  Oftentimes reminisced as happening in the sandbox, we think back to our young selves giving up what we hold most dear (in this case, some cheap plastic toy) to allow someone else to benefit from it.  It seems so simple and obvious, but how many toddlers do you know that immediately give into the concept…easily handing over that toy without a moment of hesitation or a slight tug back or possibly the more extreme screaming tantrum?   Over time, what happens is that the more they share, the more they see it puts a smile on their friends’ face, or gives them something in common to “chat” about.

You don’t need to be clairvoyant to see where I’m going with this.  Sharing is at the core of PatientsLikeMe, and it’s what makes our communities so special.  More than 32,000 patients are online sharing something they hold dear — details about their health — so that others can see it, learn from it, and dialogue about it.  It’s truly inspirational and something we believe is transforming healthcare as we know it.

But sharing doesn’t have to stop there.  From a marketing perspective, one of the most widely used and successful viral tactics is the “Share This” button.  You see it everywhere online - blogs, news articles, videos, and more.  We just recently implemented it across our site, so patients can “Share This” treatment or symptom report, press releases, research findings, etc.  It’s an easy way to pass that “toy” across the cyber-sandbox to others who might learn or benefit from it.

It’s nice every once in a while to think back to what we learned as kids and figure out a way to incorporate those values into our adult lives.  Sharing is just one of those things.

So you weren’t the type to share your toys?  Feel like you share too much?  Comments are welcome below.

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.

A year ago today, PatientsLikeMe launched our combined Mood community for patients with depression, anxiety, bipolar, obesessive-compulsive disorder and post-traumatic stress disorder.  It was first announced to the world in Thomas Goetz’s article, Practicing Patients, featured in New York Times Magazine.

Since then, more than 8,700 patients have joined the community, sharing detailed information about their symptoms, treatments and overall progress to learn more about themselves and others. Besides specific drug therapies (like Clonazepam or Lamotrigine), did you know many patients cite Listening to Music and Journal Writing as top treatments as well?  Check out what they have to say.

Do you have problems concentrating?  That’s the number one symptom reported by our members.  Other top symptoms include muscle tension, headaches, back pain and stomach pain.

In the coming weeks, we will continue to share some interesting tidbits about the community, including some powerful personal stories straight from our members.  Stay tuned!

This blog post is the second in a series from our attendance at the 19th International Symposium on ALS/MND in Birmingham UK in November 2008. When PatientsLikeMe attended the previous ALS/MND Symposium in Toronto Canada in December 2007, I was given a platform presentation to show the assembled clinicians, scientists and researchers what we had developed for patients with the condition. This year, as part of a session on the history of ALS/MND patients online, I was given the opportunity to show attendees some of the improvements we had made to the site since that time.

* Percentile curves for patients with PLS - When I said that we had more than 100 patients with PLS registered on the site, there was a collective gasp from the audience. Our large sample has allowed us to show PLS patients how they compare with other PLS patients for the first time. (Available to PLS members of the ALS/MND community)

* Geomapping - Patients on our system can see a map of the world and see registered users nearby using a Google Maps API developed by our resident geomapping whiz Steve Hammond. This allows patients in isolated areas, or even busy cities, to find other patients like them who they might want to meet up with or talk to on the phone. (Available to users in all our communities)

* Treatment database - By integrating the Multum Drug Database into our treatment system, users are presented with an accurate list of possible dosages for the treatments they are taking. We have also added an evaluation system that lets users share their opinions about a drug’s efficacy, adherence, burden, and side effect profile. (Available to users in all our communities)

* Lithium study tool - We have showcased our custom lithium study tool in a number of recent blog posts, but for many delegates this was the first time they had seen the evidence we’ve been collecting on lithium in ALS/MND.

* Future state modeling - Simply “tracking” a patient’s progression has never been the goal for us; we’ve always wanted to take past information and use it to predict the future state of an individual patient. In relatively linear diseases like ALS, that means we can help patients to plan in advance for when they might need a wheelchair or other equipment. It’s often the case that ALS/MND patients don’t get the equipment they need until several months after they could have benefited from having it. Such a tool would give a customized prediction for the individual patient. After all, most of us don’t want to know about the “average” patient, we want to know about a “patient like me”!

As we end the year, we give you the last 2008 video from PatientsLikeMe and the first of our new fibromyalgia community.  We asked this newly launched community to tell us “How are you overcoming fibromyalgia?”  This is what they had to say:

Thanks to all of you who contributed your “voice” to this video.   It’s truly a reflection of patients helping patients live better every day.  We look forward to hearing more voices in 2009!

Happy New Year!

PatientsLikeMe’s David S. Williams sits down with well-known blogger, triathlete and fibromyalgia patient, Minnie Lee.   Lee, an early member of our new fibromylagia community which launched this week, has a public profile on the site.

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	(David) When were you diagnosed with fibromyalgia and when were your first symptoms?
	(Minnie) I was diagnosed in late 2002.  However, my first symptoms started as early as 1998, and then became more prevalent and frequent in late 2000.
	(David) How has fibromyalgia changed your life?
	(Minnie) On its onset, the changes were negative.   I couldn’t engage in my usual social activities and I was getting sick more often than I was used to.  It was a shock to me, having always been such a healthy person all my life.  I limited myself even further using my “strangely named illness” as a crutch, which led me to be even more dormant.  That was early on.However, in the past 2-3 years, I have to say that fibromyalgia changed my life for the better.  It has given me purpose in life - to improve my own life and help others improve theirs by example of exercise, healthy eating and proper treatments.That said, while I still manage a fairly active and busy lifestyle– from having a full-time job to training for triathlons– I did have to make certain adjustments in my life to make sure I can work within my limitations.  First of all, I had to make the huge adjustment mentally to be ok with admitting that there are just certain things I can’t do.  For a type A person like me, it was one of the most difficult things I had to change (and it took a while).  I limit the number of errands I run in a day, even if I have a much longer list of things to do.  I spread them out over several days - which requires planning some things ahead.  To ensure I get good sleep (in both quality and quantity) to accommodate my training regimen, I make choices every day that make sleep and rest a priority.  If this means limiting my social engagements and having to cancel certain commitments, so be it.  I also had to make a mental shift at work to not get as affected by stressful situations, which has helped me greatly.
	(David) What motivates you to train for triathlons and half-marathons?
	(Minnie) There are three major factors that motivate me. First and foremost, this was my promise with God - to turn this negative situation around into a positive one.  I made a promise to swim, bike and run to not only help myself but to help others find hope in their every day lives.  Secondly, it is my fellow patients that motivate me to get up and moving.  I know there are people out there whose conditions have gotten so bad that they cannot engage in any kind of exercise.  I can’t imagine the pain and suffering they go through, and I want to dedicate my races to them, while giving hope to others that anything is possible.  I know that these endurance races are a rather extreme measure to promote the benefits of exercise, but I think by doing something extreme I can make a better point about what we’re capable of.  (If I can do a triathlon/half-marathon, you can definitely go for a walk and see how you feel!)  Lastly, my motivation is my own past.  Four to five years ago I was drowning in self-pity, dependent on muscle relaxants and pain killers, spending a lot of my leisure time in bed, and was frequently missing work enough to make me feel concerned about keeping my job.  They were some of the darkest days of my life.  Now, all I have to do is remember those days to get myself moving on a tough day.
	(David) How do you see PatientsLikeMe helping the fibromyalgia community?
	(Minnie) Launching a community site for fibromyalgia on PatientsLikeMe has significant meaning.  First of all, it adds to the recent recognition the illness has been gaining in the medical community.  It is time for any discussion of this illness being real or not to be over and done with.  Secondly, and more importantly, it has massive potential of being a crucial resource for patients that lack information and options about their conditions, by having every possible symptom and treatments laid out in one central source.  Additionally, patients can and will find friends that understand what they go through (and we don’t have many of those, because fibromyalgia is still a foreign language to many people).  Another amazing possibility is that this can be a great source for doctors, because knowledge and understanding of fibromyalgia among doctors can always be improved.  This can be the perfect linkage between patients, their support system and health care professionals.  I can’t help but be so enthused and excited about this endeavor PatientsLikeMe has set forth.  They are bringing such a helpful platform of information and communication to the fibromyalgia community.  Thanks!!!!