20 posts from January, 2011

How Patients Like You Use Your Treatments in the Real World: Two New Studies

Posted January 31st, 2011 by

Ever wonder how many patients like you are using drugs off-label?  Or how hard is it to take MS medications as prescribed?  You’re about to find out.

In January, the PatientsLikeMe R&D team published not one but two studies in the Journal of Medical Internet Research (JMIR) in an effort to provide answers about how patients like you are actually using your treatments.  We’ll highlight both studies here on the blog today and tomorrow.  (Note: Because JMIR is an open-access journal, the articles are free for you or anyone to read in full, without fees or subscriptions or a library card.)

Study One:  Off-Label Drug Usage

Our first study looked at the rates of off-label drug usage in our communities.  What do I mean by “off-label”?  When a drug is approved by the FDA (or outside of the US, by other regulators such as the EMEA), it is “indicated” for the treatment of a specific condition, which permits the manufacturer to market it to doctors who treat that condition and patients diagnosed with it.  This indication is described on the medication’s label.

Any physician may choose to prescribe a treatment for a purpose that has not been indicated, however.  This is known as “off-label” use.  Manufacturers are not allowed to promote such use, though, and because most research focuses on new drug development, there are few systematic ways to discover how common off-label drug use is or to quantify its effects.  Yet at PatientsLikeMe, thousands of patients like you are sharing data on this very practice.  So, the R&D team decided to take a closer look.

This led to our JMIR study entitled “Patient-reported Outcomes as a Source of Evidence in Off-Label Prescribing: Analysis of Data From PatientsLikeMe” (which I am proud to report was the winner of the inaugural Medicine 2.0 award).  We started by identifying two widely used drugs to study:  amitriptyline (a tricyclic antidepressant indicated for the treatment of depression) and modafinil (a wakefulness-promoting drug indicated for the treatment of narcolepsy).  Then, we examined how patients like you were using them used across five condition-based PatientsLikeMe communities: MS, fibromyalgia/chronic fatigue syndrome, ALS, mood disorders (depression, bipolar disorder, and anxiety disorders) and Parkinson’s disease.rd1

Our data revealed that less than 1% of almost 2,000 patients taking modafinil and only 9% of nearly 1,400 taking amitriptyline are taking each drug for its approved indication.  That means the vast majority of you are taking these drugs “off-label.” You also reported higher perceived efficacy for off-label uses than for approved indications, surprisingly. Another interesting discovery is that many of you cited what are normally considered the side effects of amitriptyline (e.g. dry mouth) as your purpose for taking the drug (e.g. to treat excessive saliva).

If researchers are only looking at clinical trial data, they’re missing the whole story because they don’t know what’s being prescribed off-label. To be clear, off-label prescribing is commonplace and standard practice in many conditions, with safety and efficacy established by clinicians’ experience rather than formal studies. However, whenever we can improve upon the status quo by unlocking a new data source (such as what you share via our site), we should seek to maximize that information.

Up next tomorrow…how you’ve helped develop patient-reported outcome instruments.

PatientsLikeMe member pwicks


What’s Your Experience with Polybion?

Posted January 29th, 2011 by

Polybion is a balanced B complex vitamin manufactured by Merck, Germany.  Available in syrup, ampoule or tablet form, Polybion contains eight different B vitamins:  thiamine (vitamin B1), riboflavin (vitamin B12), niacin (vitamin B3), panthothenic acid (vitamin B5), pyridoxine (vitamin B6), biotin (vitamin B7), folic acid (vitamin B9) and the cobalamins (vitamin B12).  All types of Vitamin B play a vital role in cell metabolism and help unlock the energy from foods.

At PatientsLikeMe, where more than 120,000 patients are sharing their experiences with prescription drugs, supplements and more, we currently have just one patient who reports taking Polybion daily for “general health.”  If you’ve taken – or are currently taking – Polybion, we encourage you to share your experience to help other patients.  PatientsLikeMe’s unique data-sharing platform allows you to share detailed data about all types of treatments, interventions and lifestyle modifications that have helped you or simply had no effect.

For example, was Polybion effective?  Did you have any side effects?  How long did you take it?  All of these things can be reported on our comprehensive treatment evaluations, which also cover dosage (how much did you take?), cost (what was your co-pay or out of pocket expense?), burden (was it easy to take the drug?) and adherence (were you able to take it as prescribed or did you skip/forget sometimes?).  If you’ve got other comments, you can share your tips and advice in a free-form manner for the benefit of other patients.

Check out the 73 patient evaluations for Vitamin B (all formulations and types, including injections of Vitamin B12) as an example.

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Learning from Others: Newsletter Highlights 2011

Posted January 28th, 2011 by

In the spirit of the New Year, here are some highlights from our recent newsletter.  Read what patients like you have to say about what they’re most interested in learning from other patients this year.

* * *

2166 (Amy) What are you most interested in learning from other patients this year?
user_45436-full (bradley25 – Mood Conditions Community)I find I offer advice to patients more often than I listen. Offering advice helps me; it makes me think about what I am suggesting. More often than not, I find I offer good advice that I do not necessarily follow myself. Hearing the words come out of my mouth can cause me to think about why I may not be doing what I am suggesting and to make changes in my own life.
kidney (mrskidneysurvivor – Transplants Community)There is not any one thing that I can say I am most interested in learning from other patients like me because I gain knowledge and insight from all patients who have had a transplant or who are waiting for one.  We all have experienced or are still experiencing similar situations and take similar medications and cope with our day-to-day health, and I learn from that.

Mine has gotten so bad that I have regular grand mal seizures from time to time, and sometimes it’s hard to carry on a conversation without looking weird.

user_9703-full (prelado – Parkinson’s Disease Community)Of course, how they’re doing with their medicine, mainly if it is the same as mine.

irish (irishtxn – HIV Community)How to keep unwanted stress out of my life! It’s hard enough being one of six siblings living in the same town, much less [being the one living] with our mother. I’m not getting any real support from them as I’d like.
My siblings do take care of my mother’s prescription costs, but they rarely offer to come in and get my mother out for while. I might rephrase that [it would be nice] to ask her to their homes.  She rarely ventures away from the house unless it has something to do with the church.  Never gets to see the other children unless it is a holiday such as Christmas.
slicky (slicky – ALS Community)I am like any other patient.  I have not experienced everything.  There is always something new to learn, and I think the best way to learn is to ask other patients on this site.  The doctors can tell you what they know from reading books or other doctors, but getting knowledge from patients firsthand is the best way to learn how to cope or [determine] the best equipment to use, or the best treatments.
I am not saying every comment on PatientsLikeMe is right, but most of the information you get on this site really is valuable to all patients and their caregivers.  The best thing is you can choose to try it for yourself or ignore it.  It really is amazing to see all these patients come together to help one another.  There is no stupid question.  If you want to know, just ask and you will get a response.
And the best thing is it is from people all over the world, so some countries may have different studies or trials or meds we do not have here in the U.S.  I have talked to people all over the world who have asked me how I have had ALS so long and what do I do to keep going.  I tell them my regimen.  I also tell them I can only tell them what seems to work for me, as most everyone knows ALS affects each of us differently, so what works for one person may not work for another.
picture_5-full (sunnyt – Fibromyalgia/CFS Community)When I discovered PatientsLikeMe it was a God-send! It was so good to know I was not alone in this. Most people do not believe what we go through. It is so hard to explain the pain and tiredness of this. I know, I was once one of the doubters.
This year I would very much like to learn how other deal with this, for one. And what treatments others use also, more alternative treatments. The list goes on…like how to cope everyday with not knowing how you are going to feel, where you will hurt or how tired you will be.
I am sure of one thing, I will probably find other answers to questions I did not even know I had! I can not thank PatientsLikeMe enough for the support and information I have gotten in the past year.
suevand1 (suevand72 – Epilepsy Community)

I don’t really know what I plan on learning this year. I really haven’t given it a lot of thought since I am so busy at home with family and work, and now I am going back to school part-time. I know everyone is just trying to get back to normal after the holidays. But I live in a family where nothing ever slows down. Believe me, you want it to, but it won’t. I do learn more about seizures (epilepsy) each year.

sapphyr (Sapphyr – MS Community)As usual, tips for living with a disability that have actually worked.

Mood Patient Interview: How Far I’ve Come

Posted January 27th, 2011 by

We continue our series from last week of getting to you the person, not just the “patient.” Here’s an interview with member “Bradley25,” a member of our PatientsLikeMe Mood Community who was interviewed for our January newsletter.   Read on to learn more about how comparing his condition over time has helped give him hope as well as his goals for 2011 .  Enjoy!

* * *

2166 (Amy) Where do you find hope?
bradley25 (bradley25) I find hope when I look at my continued progress. When I look back and compare the severity of my condition over the years, I am amazed at how far I have come.

Fifteen years ago, my life was a complete wreck. I was in and out of the hospital and had trouble holding a job for more than a few months. Ten years ago, I had many of the same problems but life was improving from a treatment plan that I held. Within the last five years, I have found a good doctor and am properly medicated.

Although life isn’t perfect today, bipolar disorder no longer controls my life, and I find it interferes less and less with my job, social life and daily routine.

2166 (Amy) What was the highlight of your holidays?
bradley25 (bradley25)

The holidays did not go so well for me this year. I had fun spending time with the family and seeing some old friends, but my family visit was a little too long and I was ready to leave shortly after my plane landed. Unfortunately, this year’s holiday highlight was the return trip to the airport since I knew it would not be long until I was back in my own home.

2166 (Amy)  What are you resolutions or goals for 2011?
bradley25 (bradley25)

I made some drastic changes to my life in July and plan to continue to work towards these goals. The most important change I have made in my life is sobriety. I am clean and sober and have been for the last six months. This change was a long time coming and is the largest obstacle in my long-term physical and mental health. Although it is often difficult, I notice many positive changes in my attitude and overall health.

2166 (Amy)  What are you most interested in learning from other patients this year?
bradley25 (bradley25)

I find I offer advice to patients more often than I listen. Offering advice helps me; it makes me think about what I am suggesting. More often than not, I find I offer good advice that I do not necessarily follow myself. Hearing the words come out of my mouth can cause me to think about why I may not be doing what I am suggesting and to make changes in my own life.

2166 (Amy) Thanks so much for sharing, bradley25!

Share Your Data to Untangle ALS!

Posted January 24th, 2011 by

Our ALS Community recently broke the 5,000-member mark, making it the largest of its kind in the world as well as the ideal platform for expedited research.  And that’s just what we’re working on.

Since the community’s launch in 2006, we’ve conducted a number of research studies, both internally and in collaboration with leaders in the field.  The goal is to turn up the answers that patients like you are seeking.  For example, can lithium slow the progression of ALS?  Or does limb dominance (aka “handedness”) correlate with ALS symptom onset?  Check out the findings from our patient-led Lithium and ALS Study as well as our work with the University of Oxford on handedness.

We also like to think of the dynamic, up-to-the-minute reports on our site, such as our treatment reports and symptom reports, as another form of “research.”   Every day, patients just like you contribute to these reports by sharing your real-world data, including what symptoms you’re experiencing, how you’re treating your condition and how well your treatments are working for you.

alsuNow, the data you share is helping even more people.  Through an exciting new partnership with ALS Untangled (ALSU), we are helping to take the data you share straight to the scientific literature – and at record speed.  ALSU is an international consortium of clinicians and researchers seeking to investigate alternative and off-label therapies for ALS using the Internet, namely Twitter, Ning and PatientsLikeMe.  Through these modern methods, they aim to provide “timely, accurate and scientifically valid analysis of alternative and off-label therapies.”

As they wrote in their mission statement, there are three phases to their cutting-edge approach:

  1. In the learning phase, they use their Twitter feed (@ALSUntangled) to collect ideas for potential therapies to investigate from patients just like you.  (Got something you want investigated?  Suggest it today!)
  2. Then, in the discussion phase, they import these targeted therapies into a closed Ning group and gather information on them from the consortium, including PatientsLikeMe.
  3. Finally, in the public release phase, they publish their findings as open-access articles in the prestigious journal Amyotrophic Lateral Sclerosis.  That means patients like you, caregivers, clinicians and researchers all over the world can read these reports in entirety for free.

Our first collaboration with ALSU focused on the use of Low Dose Naltrexone (LDN) for ALS.  The consortium analyzed data from the 31 members of PatientsLikeMe taking LDN to determine if there was evidence of benefit.  What did they find?  Efficacy data shared by these 31 ALS patients suggested that most did not notice any benefit, and side effects included headaches, nausea and diarrhea.  On this basis, along with a review of the literature, ALSU concluded that it does not recommend LDN for ALS patients at this time.  Read the full LDN study here.

Going forward, we hope that you will continue to share your evaluations of alternative and off-label treatments for ALS so that they can inform the world’s top researchers.  We’re thrilled that your data is being taken seriously by the wider medical community, and we encourage you to participate fully in this novel research project.

PatientsLikeMe member pwicks


Share Your Experiences with the Antidepressant ADCO Mirteron

Posted January 22nd, 2011 by

ADCO Mirteron is an international brand of mirtazapine, a tetracyclic antidepressant that is used to treat depression and, in come cases, insomnia.  At PatientsLikeMe, where more than 115,000 patients are sharing their experiences with prescription drugs, supplements and more, we have just one patient who reports taking ADCO Mirteron while more than 300 patients report taking another branded or generic formulation of mirtazapine. (Other brand names include Remeron, Avanza, Zispin, Axit, Mirzaten and Rexer.)

What can we learn from these patients’ experiences?  Quite a bit, actually, thanks to PatientsLikeMe’s unique data-sharing platform.  For example, the most commonly reported dosage of mirtazapine is 15mg daily, the most commonly reported cost is “under $25,” and the most commonly reported side effects include weight gain, increased appetite and drowsiness.  153 of our patients have discontinued mirtazapine, with side effects, lack of efficacy and doctor’s advice among the top reasons cited.

Here are some highlights from the 130 treatment evaluations our patients have submitted for mirtazapine (the generic form of ADCO Mirteron):

  • “After trying almost every other depression med and mood stabilizer out there, this is the one that’s worked well for me. Wish I had found it sooner.” – Patient with major depressive disorder

  • “I take this medicine to help me sleep at night, but it also helps a bit with my depression and anxiety.” – Patient with fibromyalgia
  • “Works well, but leaves me a little sleepy or slow throughout the day. Need to make sure you get 8-9 hours sleep or the sleepy feeling stays with you all day.” – Patient with post-traumatic stress disorder (PTSD)
  • “Very hungry when taking this med. I take 30mg in the morning and by 2pm I have had my total daily allowance of calories!” – Patient with general anxiety disorder (GAD)
  • “When I was depressed, it was very effective and my body adjusted to the sedation effects. As my depression lifted, I experienced more and more difficulty in waking up.” – Patient with bipolar disorder
  • “I can see why other people can have problems with the constant drowsiness and increased appetite/weight gain, but for an anxious under-eating insomniac like me, it was ideal.” – Patient with major depressive disorder

JOIN PATIENTSLIKEME TODAY

Have you taken ADCO Mirteron – or another brand of mirtazapine?  Join PatientsLikeMe and add your experiences to our growing body of knowledge.  Then, stay for the support.  With nearly 30,000 members who report a mental health condition, we have a tremendous amount of discussion and activity in our Mental Health and Behavior Forum.  Chime in today.

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The Patient Voice: Exploring New Chapters

Posted January 21st, 2011 by

We’ve got more of the patient voice taking us into the weekend. Today we have an interview with AlwaysLearning, a 3-star member of our Parkinson’s Disease Community. We caught up with AlwaysLearning at the 2010 Parkinson’s Disease Unity Walk last spring. She shared with us how she learned about her diagnosis and some of the changes she has made in her life to help her manage her Parkinson’s. Although she’s “always learning,” this member also always jumps at the opportunity to share. Enjoy the video and have a great weekend!


Listen Up! Here Comes The Patient Voice

Posted January 20th, 2011 by

In addition to hearing from you through our PatientsLikeMe newsletters, we sometimes get a chance to meet you in person to hear what you have to say about living with your condition.   Here are two videos highlighting interviews we conducted in 2010 with patients just like you.  In the first video, you’ll hear directly from members of our Parkinson’s Community, representing Team PatientsLikeMe at the 2010 Parkinson’s Unity Walk.  The second video is from the U.S. Transplant Games, where we interviewed YellowisJoy, a member of our Transplant Community and National Kidney Foundation’s Team Mid New England. Listen up – here comes the patient voice!

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ALS Patient Interview: Never Give Up

Posted January 19th, 2011 by

We continue our series this week of getting to you the person, not just the “patient.”  Today’s interview is with “iceberg,” a member of our PatientsLikeMe ALS Community and another 2010 newsletter interviewee.   Read on to learn more about what keeps him motivated, how his condition has affected his work life and how he took part in the PatientsLikeMeInMotionTM program.  Enjoy!

* * *

2166 (Amy) What keeps you motivated?
iceberg (iceberg)

I have always been self-motivated. I have been running since my high school days, running cross country and track in high school. I started to run again in 1978 and even ran a marathon in 1990 when I was 40. I continued to run until 1995 when my foot drop became so severe I began to trip myself.

My wife says I am just too bullheaded to give in to ALS. I think watching my grandson grow up is my motivation too. In 1998 when he was born, I didn’t know if I would see his first birthday. He is now 11.

2166 (Amy) Who do you admire and why?
iceberg (iceberg)This is a hard question to answer. I admire anyone who has ALS and continues to battle to live. When I travel to Washington, D.C., for Advocacy Days and see PALS in wheel chairs with breathing tubes and feeding tubes and see how they are fighting to live, it makes me admire them. “Never Give Up.”

2166 (Amy) How has your condition affected your work life?
iceberg (iceberg) I was a Toll Collector on the Pennsylvania Turnpike until August 23, 2009, and I am now on disability retirement. I have gradually lost the use of my thumbs over the last several years. I was no longer able to keep up with wrapping coins and counting change back to the customers. So I guess you would say it has affected my work life quite a bit.
2166 (Amy)  What’s your favorite aspect of PatientsLikeMe?
iceberg (iceberg) PatientsLikeMe has afforded me an opportunity to meet a lot of people with ALS who I have become friends with over the past several years. Some of the people that I have talked with on PatientsLikeMe I had the pleasure of meeting in D.C. over the past several years. PatientsLikeMe also supported our walk team this past summer for Walk to Defeat ALS. [See photo on left]  My thanks to PatientsLikeMe for the ability to make new friends and talk about how ALS has affected our lives.
2166 (Amy) No, thank you for being so willing to help others learn from your experiences with ALS, iceberg!

Parkinson’s Patient Interview: A Spring in Your Step

Posted January 18th, 2011 by

As you know, we like to just check in with our members to see how you’re doing as a person, not just a patient.  This week on the blog, we’re highlighting some interviews to help you get to know some of the people here just like you.  Here’s an interview with member “angela_b,” a member of our PatientsLikeMe Parkinson’s Community who was interviewed for one of newsletters last year.   Read on to learn more about what puts a spring in her step, how she copes with her Parkinson’s, and what’s she’s learning from other patients.  Enjoy!

* * *

2166 (Amy) What puts a spring in your step?
angela_b_pd-original (angela_b)

That would have to be my new love for crafting. I didn’t realize how many ideas I had hiding away in my head until just recently. Now, you cannot even mention a shower or party, and I’ll start planning what favors to give.

2166 (Amy) How do you like to spend holiday weekends?
angela_b_pd-original (angela_b)

I am a hostess by nature – that I get from my momma – so I love to have picnics/parties at the house. Plus it’s easier for me to give the party than to go to one. I have four kids, ages 11, 8, 3, and 1, so you never know what the moods will be!

2166 (Amy) What is helping you to cope with your condition?
angela_b_pd-original (angela_b)

I have a humongous support system. My family, friends. It’s pretty awesome. Plus, my husband and I just started our own non-profit (Running for Parkinson’s) to raise money and help fund Parkinson’s related issues within our community. We run (he runs, I try very hard to…LOL) and this helps keep me motivated!

2166 (Amy) What have you learned recently at PatientsLikeMe?
angela_b_pd-original (angela_b)

I’ve learned a lot from lurking. I’ve found many answers, like my cramping when I run is dystonia, and a lot of people have the same sleep issues. I’ve found that we all have a lot of “non-parky” things in common, such as career choices, crafting, running.

We are all in this fight together. It’s great to know that I am not alone in this, but surrounded by great, loving, caring people.

2166 (Amy) Thanks, angela_b!

Probiotic Users: Have You Experienced AccuFlora Side Effects?

Posted January 15th, 2011 by

At PatientsLikeMe, where more than 115,000 patients are sharing their experiences with prescription drugs, supplements and more, 20 patients report taking the probiotic AccuFlora while zero patients report experiencing AccuFlora side effects.  In addition, zero patients report discontinuing the supplement as a result of AccuFlora side effects.  The seven patients who have stopped taking AccuFlora list reasons such as expense or “it didn’t seem to work.”  (See the AccuFlora treatment report for more details.)

What exactly is a probiotic?  Falling within the realm of complementary and alternative medicine (CAM), a probiotic is an over-the-counter dietary supplement containing a form of “friendly bacteria” that may aid digestion, inhibit potentially harmful bacteria and support the intestinal tract.  In the case of AccuFlora, the live microorganism or “good bacteria” used is acidophilus, one of several bacteria used in the production of yogurt. 124 patients report taking some type or brand of acidophilus at PatientsLikeMe, and the only reported side effect amongst all of them is acid reflux (1 patient).

Now that we’ve addressed AccuFlora side effects, what else do patients have to say about this brand of probiotic?  Among other reasons, patients report taking AccuFlora for general health, bowel problems, diarrhea and irritable bowel syndrome (IBS).  The most commonly reported dosage is “daily,” the most commonly reported duration is “2 years or more,” and the most commonly reported cost is “under $25.”  From the four patient evaluations submitted for AccuFlora, we can also see that all four patients ranked the supplement as “moderate” or “major” in its effectiveness.

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Have you taken AccuFlora – or experienced AccuFlora side effectsJoin PatientsLikeMe and add your experiences to our growing body of knowledge.

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Comparing Our Transplants Community to the UNOS/OPTN Databases

Posted January 13th, 2011 by

Last November (2010), PatientsLikeMe was fortunate to have the opportunity to showcase our research at the world’s largest gathering of kidney and kidney transplant professionals.  The American Society of Nephrology (ASN) annual meeting is the premiere event platform for debuting revolutionary treatments, cutting-edge technological breakthroughs and top research findings.

PatientsLikeMe presented a poster about our Transplants Community to more than 12,000 physicians, scientists and other healthcare professionals from all 50 states and around the world.  The poster was very well received, and it allowed us to introduce our relatively young Transplants Community to a wide array of industry professionals, many of whom will pass the word on to their patients.

screen-shot-2011-01-13-at-35839-pmThe poster we presented was elegant yet simple in its design.  Essentially, we compared the profile of our Transplants Community – now with more than 3,100 patient members – to published data from the United Network for Organ Sharing/ Organ Procurement and Transplantation Network (UNOS/OPTN) databases.  What did we find?

  • About half of our kidney transplant patients knew the exact degree of tissue matching they had with their donor (referred to as HLA matching)
  • The fewest HLA mismatches in kidneys came from deceased rather than living donors
  • Within the living donors, the closest matches came from siblings, followed by parents and children

These preliminary findings set the stage for more advanced research.  Our goal is to answer a number of questions that are important to patients like you.  For example, who is able to keep their transplanted organs the longest, and why?  Which pre- and post-transplant medication regimens are the easiest on you?  And what is the best outcome you can hope to achieve – and how can you get there?

Thanks to all of our transplants members for contributing to this exciting research.  With your help, we look forward to presenting the answers to these questions and more at future ASN conferences.

PatientsLikeMe member cbrownstein


Aligning Interests: A PatientsLikeMe Year in Review (Part VII – Business Development)

Posted January 12th, 2011 by

2010 was a strong year for business development at PatientsLikeMe.  Our goal was – and continues to be – to align patients’ needs with industry interests in order to maximize interaction between the two.  Here are a few of our successes and challenges over the year.

Successes

1.  New Partnerships, New Communities

In the first quarter of 2010, PatientsLikeMe launched two communities with corporate partners.  UCB helped us develop our Epilepsy Community, while Novartis partnered with us to create our Transplants Community.  Both communities have grown to more than 3,000 patient members and are now the largest of their kind in the world.

As with all of our partnerships, we made sure the focus is on the patient experience.   For example, what are your perceptions about the medications you take?  How do you see these treatments impacting your quality of life?  Getting quantifiable data on such questions can help our partners understand how they can help patients like you improve your health outcomes.

2.  Enhanced Services for Partners

When we create products and services for our corporate partners, it’s with a single objective:  to amplify the patient voice.  As a result, healthcare companies who wish to improve health outcomes have the information to improve their products and services accordingly.  In 2010, PatientsLikeMe further heightened the voice of patients by enhancing two existing products.

PatientsLikeMeListenTM and PatientsLikeMeLandscapeTM

screen-shot-2011-01-12-at-113913-amThese complementary services help measure both the frequency and sentiment of treatment discussions in our community forums.  In 2010, we added functionality that allows our partners to see a longitudinal comparative view of patient sentiment (using  PatientsLikeMeListenTM) as well as identify discussion topics that are rising within a forum (using PatientsLikeMeLandscapeTM ).  Both products help to elevate patient concerns and bring their importance and relevance to life for industry partners.

Challenges

As a for-profit health company that enables data sharing by patients, we knew we’d face our share of challenges.  2010 was no different.  Many groups, including patients, nonprofits, government and industry, had valid concerns about working with PatientsLikeMe because of our Openness Philosophy.

1.  Guidance on Industry Interaction with Social Media

One of the main (and valid) concerns our industry partners express is that the Food and Drug Administration has yet to deliver clear guidelines on how to interact with social media.  Dipping their collective toes into the social media wave pool is perceived as risky because the FDA levies severe penalties for companies attempting to directly sell to patients.

PatientsLikeMe has taken a leadership role in addressing this concern by further developing our PatientsLikeMeLeadersTM service. After investigating all privacy and regulatory conditions, PatientsLikeMe has created a fully compliant solution for direct industry-patient feedback in an online forum that we moderate.  Now you as patients will be heard directly by those making decisions on what treatments are developed and how they are introduced, while our partners can learn what patients like you want and need – without fear of non-compliance.

2.  Being Open About the Data Scraping Incident

In May 2010, we discovered that a major media monitoring company had created a patient account and automatically downloaded forum posts in order to add data to their sentiment analysis client service.  Not only is that a violation of our User Agreement (“You may not use any robot, spider, scraper, or other automated means to access the Site or content or services provided on the Site for any purposes.”), but it reduces the trust patients have with our site.

We dealt with this challenge openly by disclosing our discovery of this “data scraping incident” the day it occurred.  We sent a message informing all patient members, and about 200 patient members left the site as a result.  In October 2010, The Wall Street Journal included PatientsLikeMe in its special series on the benefits and risks of sharing health information online, with the practice of data scraping highlighted as a risk to patients.  We welcomed this article coverage and continue to engage with other leaders in this ongoing discussion.

Since our PatientsLikeMeListenTM product measures sentiment of discussions in our forums, we reminded our members about this similar service.  We will continue to inform and educate our members about how we conduct business so there are no surprises.

Summary

In 2010, we continued to grow our patient communities and further confirmed that the success of our business lies in aligning patient and industry interests.  In fact, we have recently been cited by the Board of Innovation as one of 10 Business Models That Rocked in 2010.

Because of the sensitivity of sharing health data online, however, we remain upfront, open and transparent about our business practices so that patients like you can be informed participants in your health, medical research and the development of effective treatments.  Happy 2011!

PatientsLikeMe member dwilliams


Rising Together: A PatientsLikeMe Year in Review (Part VI: Nonprofit Partnerships)

Posted January 11th, 2011 by

Why does it feel like “second nature” for PatientsLikeMe to create innovative partnerships with nonprofits?   Nonprofit organizations are dedicated and centered around putting patients first – a concept that’s near and dear to us too.  In 2010, we focused on refining our nonprofit partnerships to bring more events and programs to patients, both online and off.  As you know from our blog last week, more patients like you sharing data on PatientsLikeMe leads to more learning and we are thankful to our nonprofit partners for helping us spread the word to bring in more patients.  Additionally, the more patients like you who know about and participate in nonprofit events and programs, the more funds raised for your research and awareness of your particular disease.

Below is a video and some details about how we worked with our nonprofit partners in 2010:

Stay tuned for exciting new programs in 2011 for you and your favorite nonprofit organizations. Creating exciting partnerships with nonprofits continues to be at the forefront in 2011 and we’re looking forward to launching new initiatives throughout the year.
PatientsLikeMe member mcotter