5 posts from May, 2010

ALS Awareness 2010: A Four Year Journey With Our PALS

Posted May 28th, 2010 by

Four years ago this Spring, PatientsLikeMe launched the ALS community with very specific goals in mind – to help patients like you take control of your disease, share and learn from one another, have a voice in real-world research and inform the companies that make your drugs and can improve your care.  Together, we have come so far as a community in making those goals, those dreams happen.  Today, to close out ALS Awareness Month, we want to honor that journey by highlighting some of the milestones you as a community have achieved.

As many of you know, the journey started when PatientsLikeMe was inspirstephensprofileed by Stephen Heywood, a young man diagnosed with ALS when he was only 29 years old. His brothers Jamie and Ben, and long-time friend Jeff Cole, built PatientsLikeMe and its flagship ALS community to help Stephen and other patients like him. After four years since launching the ALS community, more than 4,500 of you – our PALS – are still sharing your data and experiences to help others. Along the way, we’ve lost some of our friends, including Stephen, but their contributions live on in the data they’ve shared with us to help further the understanding of this disease.  Jamie recently said it this way: “the desire is that this disease should no longer kill, but we do our best to help people live with it today.”

Thank you for living with it today and sharing those experiences with your fellow PALS, industry, researchers…all of us.  You are truly making a difference.

  • Spring 2006: The ALS community launches!
  • February 2007: PatientsLikeMe wins its first scientific award for a poster describing our work in ALS at the British Neuropsychiatry Association AGM in London, England.
  • July 2007: Your contributions lead to PatientsLikeMe’s first scientific discovery. PatientsLikeMe publishes a paper in Acta Psychiatica Scandinavica showing that some PALS experience uncontrollable bouts of excessive yawning; an unusual symptom twice as common in the bulbar-onset form of the disease compared to those with a limb-onset.
  • December 2007: Your sharing of real-world experiences helps PatientsLikeMe make a big splash at the International ALS/MND Symposium in Toronto, Canada. The team gives its first platform presentation to show off the website, and your health data, to ALS researchers, scientists, and clinicians.
  • February 2008: An Italian study finds that the drug lithium carbonate slows the progression of ALS. Many of our PALS begin taking the drug, and so with your help, PatientsLikeMe embarks on our own observational study of the drug by launching a novel tool on the site.
  • May 2008: Your voice in research is heard loud and clear.  PatientsLikeMe publishes its first survey in the European Journal of Neurology, showing that while 90% of PALS were warned about physical symptoms of their condition, only 10% were warned about possible psychological consequences, and two-thirds wanted to be told.
  • November 2008: PatientsLikeMe’s Paul Wicks and Jamie Heywood once again attend the International ALS/MND Symposium to give an overview of the history of ALS online, and present our very first findings from the lithium study. Even though we were only presenting preliminary data, there was a lot of buzz about this new and interesting approach to conducting research – with you, the patient, in the driver’s seat. We also gave a few sneak-peeks at upcoming features for the site.
  • December 2008: PatientsLikeMe and some of our fellow PALS are spotlighted in  two major media stories (CBS Evening News with Katie Couric and BusinessWeek) helping to raise awareness about ALS.
  • April 2009: Following the discovery of another gene for ALS in February, PatientsLikeMe adds the ability for patients to enter and use their own genetic test results to find other patients like them with our genetic search feature.
  • May 2009: In response to a request from one of our patients, Cathy Wolf, the PatientsLikeMe research team carried out a study to extend the scale, something we call the ALSFRS-EX (Extension), which helps capture functional changes in patients with advanced ALS.
  • August 2009: Thanks to you, PatientsLikeMe now has the largest dataset of patients with Primary Lateral Sclerosis (PLS) and Progressive Muscular Atrophy (PMA) online than ever recorded before. We shared this data back to the community through an upgrade to our ALS charts.
  • October 2009: The ALS community and all that you’ve shared is the focal point of Co-founder Jamie Heywood’s powerful talk at TEDMED, called “The Big Idea my Brother Inspired.”  In the presentation, he describes the creation of the site, preliminary results of the lithium experiment and shows some of our most advanced tools still in development.
  • December 2009: The power of sharing your health data is highlighted in the PatientsLikeMe presentation at the 20th International ALS/MND Symposium in Berlin where the PatientsLikeMe research team unveiled our next round of analyses on the lithium study.  The team also presents preliminary results of our genetics tool, and berlin-lithium-poster-207x3001a commercial project exploring emotional lability in ALS, undertaken with our partners Avanir Pharmaecuticals  (see “how we make money“).
  • January 2010: PatientsLikeMe rolls out new profile charts in the ALS community to help you, the patient, understand your own profile better and tell your story more effectively.
  • April 2010: PALS continue to team up to raise awareness and money for ALS research online and off.  This video highlights your participation in the PatientsLikeMeinMotion(TM) program.
  • May 2010: This month we see the release of a study carried out in collaboration with our partners at the NEALS Consortium investigating some of the barriers to research participation that some of you may experience.  Additionally, all your contributions to the lithium study have been collected and analyzed by now, and the PatientsLikeMe research team submits it for peer-review publication to a leading journal.  Thanks to you and your peers, this final paper highlights the potential of new ways of collecting and analyzing data in ALS to advance clinical trials and find faster cures.
  • May 2011: Just imagine…

PatientsLikeMe member pwicks

Transparency, Openness and Privacy

Posted May 20th, 2010 by

The following message was sent this morning to all members of PatientsLikeMe.  Please read what we have to say about openness, sharing and its privacy implications and join the conversation.


Dear PatientsLikeMe Members,

What are the privacy implications of sharing in this open, online community?  We talk a lot about this and, as a company, strive to be transparent about the risks and rewards to sharing here.  Two recent events have prompted me to reach out to all the members of PatientsLikeMe to ensure we all understand openness, sharing and its privacy implications.

The first event happened last month when a patient asked us to remove all the data on his/her profile from the system.  The member wrote:

“The reason I’m leaving is I feel I didn’t fully understand the privacy impact of having all my health information for practically anyone in the world to see.”

We rarely receive a request like this, but since receiving this one, I have thought about it every day.   We do not want anyone to be surprised by the impact of sharing data on PatientsLikeMe.  We believe in openness, but we also want people to knowingly make the choice to be open with their health information.

This brings me to the second event.  Recently, we suspended a user who registered as a patient in the Mood community.  This user was not a patient, but rather a computer program that scrapes (i.e. reads and stores) forum information.  Our system, which alerts us when an account has looked at too many posts or too many patient profiles within a specified time interval, detected the user.  We have verified the account was linked to a major media monitoring company, and we have since sent a cease and desist letter to its executives.

While this was not a security breach, it was a clear violation of our User Agreement (which expressly forbids this type of activity) and, more significantly, a violation of the community’s trust.  Your Account Information (e.g. your names and emails) was NOT in danger of being stolen.  It is likely that the forum information that was “scraped” would be sold as part of that company’s Internet monitoring product.  In fact, we sell a similar service, PatientsLikeMeListenTM, to our clients so they better understand the voice of the patient.

What does this all mean to you?  What can you do?

  1. We recognize that people write very personal things in the forum and often use real names.  In any growing network of tens of thousands of members, there is no way to ensure that information you share in the forum or on your profiles will not be read by others.  Know that the information you enter in our system is shared (unless we tell you it is private, like full name and email in your Account Information).  It can and will be read by other patients, the PatientsLikeMe team, researchers, and others that use PatientsLikeMe, including our partners with whom we share de-identified data.
  2. Please weigh the benefits of sharing and the amazing value you all create in helping each other versus the risks of people, unknown to you, reading your posts.  Your input helps PatientsLikeMe and our partners learn about your disease and make better products to meet your needs.
  3. Learn and understand why we value openness.  If you haven’t, please read the Read This! FAQ.  If you want to know how we make money, you can take a look at this FAQ or go to our Partners Page and know that we sell your data and insights (but not your identity) to our customers.
  4. Consider the value of being part of the PatientsLikeMe community and make the right risk decisions for yourself.  Together, we can really change the way diseases are treated and managed by putting you, the patients, in the center of healthcare.  We can hold companies accountable for the strengths and weaknesses of their products and also help make those products better – but that requires openness and that is your choice.

We welcome your comments and questions and we love feedback. This has been posted on our blog, which is a good place to dialogue, as is the forum.

On behalf of the entire PatientsLikeMe team, I want to thank you for being part of our communities and sharing your experiences.

Ben Heywood
President and Co-founder, PatientsLikeMe

PatientsLikeMe member bheywood