PatientsLikeMe wants to wish all of our community members, Facebook fans, Twitter followers, blog readers and general company enthusiasts a very happy holiday season. Here’s a video from our leadership team to put a smile on your face.
Posted by Lori Piscatelli Scanlon | December 22, 2010
In December community newsletters (launched earlier this week), we asked some of our members to think about what they’ve shared and compared in 2010. Below are highlighted answers from each interviewee across all nine community newsletters. Thank you for your contributions.
We also want to thank all of you who have contributed to the 90 newsletters we ran this year, including the newly launched ones in our Epilepsy and Transplants communities. Finally, a special thanks goes out to our newsletter writer, Amy Morton, for pulling these together every month.
PatientsLikeMe has provided me with new friends-people who are experiencing the same problems as I am. I’ve learned that there isn’t a single question that won’t get a vast myriad of answers from the community. I’ve learned that we’re all very different people, and I’ve learned we don’t always agree. I’ve learned that we all care enormously for each other and are very eager to help those who find themselves in the same boat as we are. But most of all I’ve learned that I am not on my own. I’m not the only one facing a bleak future and not the only one who is able to appreciate what he has at the moment.
I really like it here in that I can keep track of all my meds with their side effects, etc. Plus I like it that I can list symptoms and have a history of all of it to review and learn from and share with my doctors. I hope that my input on meds, therapies, etc., helps other people. It is good not to be alone.
It has given me the experience of reading about others who are in situations similar to mine. It has shown me that I am not alone. I love reading the newsletters and the comments from other readers. It also helps to keep me up-to-date on any new suggestions or treatments.
Also, I became acquainted with someone online through PatientsLikeMe. We actually live in the same town, both work in the field of Education and have had Parkinson’s for the same length of time. Getting together with her was a pleasure, and she introduced me to the idea of meeting with a support group, which I had never done before.
It is invaluable. I find the Symptoms and Treatments areas so helpful. I have learned (from genuine people who are taking these meds) that some of my “quirky” side effects and sufferings from the meds I take can and do happen to others and are not imaginary. (My general practitioner and Consultant just brush the list aside and shrug their shoulders).
I have learned that I am not alone with my illnesses, which is good to know, and I have also learned that there is “light at the end of the tunnel.” I try to keep my profile as up to date as possible in the hope that it will be helpful to at least one or two members. I rate my Daily Mood [now called InstantMe] at least five days per week and always complete my Mood Map, again for the same reasons.
Well done PatientsLikeMe and its members. Keep going, you are doing really good work and long may it continue.
I love organization and having PatientsLikeMe help me to organize all of my medical information. I would like to have an ability to log simple notes on the PatientsLikeMe profile so every time I go to my doctor I can make some general notes (if needed) for that visit on my experience and what was covered with my provider.
(Note that all users can now use InstantMe to add notes/annotations to your Doctor Visit Sheet)
PatientsLikeMe has been such an encouragement to me, not only in what others have given to me through sharing their stories, but also by opening up a window for me to be an encourager also. I love the newsletters that are super reminders of how to not get off track, and also how to be good to myself.
I think I have been pretty good at sharing, but this has been one new method, especially with some of the health issues with others facing similar situations. In the past I have answered questions for people who had their first seizure or just questions, but with this site, I am able to communicate with others who have had the same operations, take the same medications, etc., and really understand things better (from a different perspective).
PatientsLikeMe has helped me so incredibly much! I’ve made so many friends that I thank God for every day. It’s just like, no matter what you have or haven’t had transplanted, whichever organ you need or have, everyone on here understands you and what you’re going through.
I just really hope that people can say that about me. It took me awhile, but no one is alone out there. Everyone is going through their own personal struggles. I just want everyone to know I am all ears!
Earlier this month, PatientsLikeMe was fortunate enough to attend the 64th Annual Meeting of the American Epilepsy Society in San Antonio, Texas. We were there to spread the word about PatientsLikeMe to some 4,000 attendees including epileptologists (physicians specializing in the treatment of epilepsy), neurologists, nurses, and researchers. We had a great spot on the booth of our partner UCB, which featured a large display for us to show the site to conference delegates and answer any questions they might have. Some of the typical questions we got were:
“Is this free for patients to use?” Answer: yes!
“How do patients record their seizures?” Answer: they can very quickly and easily enter both the frequency and severity of each kind of seizure they had during the week
“Can I send you some patients?” Answer: definitely!
“What kind of research can you do with the site?” Answer: stay tuned…
We were also there to present a poster comparing our data to another large data set, the Pharmetrics insurance claims database. Now, we know reading about statistics isn’t the most thrilling of subjects, but the idea was to answer another important question we hear all the time: “How biased is your community?” Biases are important because they affect the quality of the research you can do and the conclusions you can draw from your findings. In our case, an early comparison of our data against a claims database suggests that our community members are more likely than the wider epilepsy population to be: i) female, ii) in their 30s-40s (more people tend to experience their first seizure either in infancy or old age), and iii) on multiple medications to treat their seizures (”polytherapy”). We want to be transparent about understanding our biases and sharing them with the world, so you can click on the poster below to see the exact findings we presented.
The conference was also a great opportunity to meet other leaders in the online epilepsy space, such as our friends at CURE Epilepsy.org, Epilepsy.com, Seizuretracker.com, and to meet with researchers from an exciting online project called the “Managing Epilepsy Well Network.” In many ways epilepsy is leading the way in online resources and we hope next year we might even convene a special meeting for us all to share ideas on the best ways to help this important patient community.
Our last opportunity to spread the word about epilepsy fell upon our Chairman and Co-Founder Jamie Heywood. He spoke to some of today’s leading epilepsy doctors in the world about how we can help patients answer the question: “Given my status, what is the best outcome I can hope to achieve, and how do I get there?”
Our recent series entitled Share and Compare focused on how patients like you can better answer the question, “How do I put my experience in context?” The answer, in part, comes from how much information you share to help create that context of real-world patient experiences. Think of it this way - with every piece of information you share, you are contributing directly to research.
When we’re conducting research, one of the things we look at is how similar or different you are to the populations at large. We even have minimum criteria for a person’s data to be usable. For example, if you indicate whether you’re male or female, you make it that much easier in determining how you “fit in.” That one piece of information helps us know if our population is in fact representative of a disease, or whether we’re only getting one specific type of patient (e.g., males with fibromyalgia who don’t have much pain). If we do get more of one type of patient, it becomes more difficult to draw any conclusions from that population and apply them to the general public.
So, you may be wondering why we need to compare to the published literature/general public? Why can’t we just say that our conclusions apply to our users and leave it at that? The answer to this question has many parts:
We have the ability to positively impact everyone with disease, not just our current members. Ideally, we will apply knowledge gained through research in our communities to all people living with diseases.
From a research perspective, we have to know our biases, and how to correct for them if possible. For example, we tend to have more women than men in our populations. By knowing that, we can “correct” for it in our analyses by making sure our proportions are correct when we look at a sample of users.
We can know how our discoveries fit in with other information known about a disease. For example, let’s say we figure out that patients who have had fibromyalgia for 15+ years improve their quality of life by doing Treatment X. If we don’t know how many patients have had fibromyalgia for 15 years or how many do Treatment X and don’t improve, the discovery loses some of its power from lack of context. Perhaps it isn’t a discovery at all! However, if we have data from our community to answer those questions and can compare it to published literature, we can trust more in our discoveries.
Here’s a great example of what can happen with the data you share. Recently, we evaluated our fibromyalgia community characteristics with the Demographics Survey sent out early in 2010. For some of our communities, the survey had fantastic results. We are now able to declare with confidence that our community very closely matches the fibromyalgia community at large (Table 1).
By maintaining your profiles and keeping accurate records of side effects, medications, background information, and outcomes (such as quality of life), you are participating in groundbreaking research that is already yielding fantastic results. Our research team has presented at prestigious conferences and written dozens of abstracts and papers. Working together, PatientsLikeMe has discovered new symptoms and compared treatment efficacy; we are also working towards creating an accurate picture of how medications work in the real world so you get the right treatment for you. This is just beginning.
We recently sat down with our executive team here at PatientsLikeMe in our first-ever roundtable-format podcast. In this PatientsLikeMeOnCallTM interview, we ask Co-founders Ben and Jamie Heywood, Chief Marketing Officer David S. Williams III, and R&D Director Paul Wicks PhD to discuss why our recent series themes are so important to the history and future of PatientsLikeMe.
Blog Series Themes:
“Share and Compare” - where you learned more about how and why patients like you are sharing their health information to put their experiences in context.
“One for All” - including visualizations on how one member of a community can be the catalyst for a universe of unparalleled dialogue and support.
While discussing how patients can continue to drive the health care process, they also help us preview this week’s discussion called “Treat Us Right.”
Treat Us Right
In this series, we focus on how you can see if your treatment is right, just by the information shared by patients like you; and how important your shared information is to research efforts - both for academia and industry to learn how they can help each of you make good choices about your treatments. We’ve heard you tell industry to “Treat Us Right” and we will talk more about it this week.
We kick off “Treat Us Right” week tomorrow with Research Scientist Catherine Brownstein, MPH, PhD describing why it’s critical to compare the PatientsLikeMe communities with the general population of the diseases to begin to assess the validity of treatment outcomes reported on the site. Stay tuned.
Want to follow our blog? Check out the sidebar to the right to sign up for a RSS Feed, email reminders or to follow us on Twitter and Facebook. (And don’t forget to “Share This” any time you see content you like).
PatientsLikeMe is dedicated to building a platform for the open sharing of personal health data. So far, our community of patients have shared over 600,000 outcome surveys, 300,000 treatment histories, and 2.3 million symptom reports. We believe this enormous collection of health data will dramatically improve how patients manage their conditions.
But there are more benefits to joining a community of patients like those on PatientsLikeMe than just sharing data: the social support from interacting with other patients has a real effect on improving patient outcomes. In a recent study published in the Journal for Medical Internet Research (JMIR), our research team found that nearly half of survey respondents (n = 559, 42%) agreed that the site had helped them find another patient who had helped them understand what it was like to take a specific treatment for their condition. Furthermore, the survey shows that those patients on PatientsLikeMe who make close relationships with other members receive significantly more benefits from those who do not.
So it is worth taking a moment to look at just how extensive the social connections are on PatientsLikeMe, and how many patients have reached out to other patients and helped improve their lives.
There are many ways to connect with other patients on PatientsLikeMe, ranging from communal conversation in our forums to direct one-on-one personal messages. While some of this dialogue is centered around sharing of health information and experiences, a part of it is purely meant as conversational discussion about everyday life. All of these interactions are important, because they help tie a community together. Here’s a glance at some of the ways you’ve connected:
Forum
You’ve created 1.2 million posts composed of 94 million words about 86,048 topics
21,865 of you have created at least one post, and 54,839 of you have viewed at least one post
You’ve marked posts as “helpful” 1.2 million times
Personal Messages
25,062 of you have sent a total of 751,668 messages
723 of you have individually sent over 100 messages
Patient Profile Pages
You’ve viewed our 80,000 patient profile pages over 15 million times
11,874 of you have left over 156,196 comments on other members’ profile pages
(Note: numbers are across all communities.)
While these numbers show just how much sharing has been going on, the following graph illustrates what the connections are like between our members. In this graph, the dots represent patients, and the lines between them connect any two patients who have shared at least 5 personal messages together. Note how many patients are interconnected. By reaching out to one another for support, conversation, data sharing and more, you’ve created a universe of dialogue that has never existed amongst patients like you.
Click for full-sized version. A graph showing personal messages made between some of the patients on PatientsLikeMe. The dots represent patients, and a line represents at least 5 personal messages between them.
Moreover, what you’re sharing with each other through these various connections represents the largest data set of its kind linking conversations to outcomes and overall health experience. This week on the blog, we’ll delve into some of these connections that have been spurred by some of our members. However, we also want to recognize that even the silent contributors (those connecting behind the scenes or outside of the forum spotlight) are as much to thank for this open network. All for one and one for all.
(About the title image. This graph shows all comments made between Epilepsy patients on PatientsLikeMe. The dots represent patients, and the lines between them represent at least one comment made. Note the highly connected network of patients in the center. Click for full-sized image.)
Posted by Lori Piscatelli Scanlon | December 1, 2010
Did you know today is World AIDS Day? Thanks to the many different organizations (including those like AIDS.gov) recognizing the day and raising awareness about HIV and AIDS.
Now a few years old, the PatientsLikeMe HIV community currently has more than 2,800 people with HIV sharing their health information to help others learn from their experiences. In honor of today, here’s a snapshot of what patients like you are sharing and learning about in this community.
DID YOU ALSO KNOW…
You can all find patients like you by searching by CD4 count, viral load, years since infection and more.
63% of HIV community members on PatientsLikeMe agreed they had better understanding of the consequences of taking a “drug holiday” after using our site
23% agreed they had decided to start therapy or counseling after interacting with others on the site
29% agreed PatientsLikeMe had helped them decide to start taking antiretroviral drugs
PatientsLikeMe research scientist Mike Massagli spoke earlier this year in a PatientsLikeMeOnCallTM podcast interview about the benefits of measuring your quality of life. How’s your quality of life been recently? You can measure yours too.
How are our members treating their condition?
Members in the HIV community are using more than 793 treatments, including prescription drugs, supplements, over-the-counter medications, life-style modifications, therapies, and more.
The top lifestyle modifications reported by our patients includes avoiding alcohol, diet and exercise and stop smoking.
Some of the top topics “tagged” in our forum discussions to date include blood counts, support groups, relationships, newly diagnosed patients and side effects.
This was the title of a brief message sent to me from Paul Wicks, our head of research here at PatientsLikeMe. He was referring to a quote I have used as my email signature for the last few years; he had discovered I had wrongly attributed it to Archimedes.
“To measure is to know” is the quote in question. I originally sourced it when searching on Google for quotes on measurement, which is one of my passions. I believe I found it on this website where it is listed among a number of business quips.
The irony is not lost on me that the Internet fooled one of the founders of a company that sells scientific data collected on the Internet into using a false reference.
I suppose it is possible that Archimedes, as one of the founders of modern science, believed in the value of measurement and might have said some Greek variation of the phrase. Unfortunately for me though, a reasonably extensive search does not indicate there is any evidence he actually uttered those words or anything like them. “To measure is to know” perhaps most appropriately belongs to Lord Kelvin and a search on Google yields 12,000 hits for this linkage. When I look deeper though and search for primary sources, I am not confident that that I can find a citation to a time he used wrote or said those exact words (note to the crowd: send me a reference if you have one). The phrase is clearly a more concise version of this quote which appeared in Electrical Units of Measurement, Vol 1, 1883-05-03.
“When you can measure what you are speaking about,
and express it in numbers, you know something about it”
- Lord Kelvin
One of my first rules of research is if you screw up, then admit it loudly and learn from it. So I admit my error loudly and I sincerely apologize to those that have referenced my use of the quote.
I think there are several lessons here for all of us as we embark on this journey of using the Internet to do medical research.
Many hits do not make something true.
Interpretation errors can come in many forms.
It turns out you can fool most of the people sometimes and this is true in literary references and in the kind of data we collect at PatientsLikeMe. This calls on us to be extremely rigorous in checking the primary sources we use. By using all the tools at our disposal, we must verify that we are not being fooled by errors of bias, noise or wishful thinking. It also demands that we are precise in our assertions of the meaning of our data, so that it describes what we know and not what we might believe.
I learned a long time ago that reading a news story or even an abstract about a research paper is a very different experience than reading the actual paper itself. While one often finds something interesting, funny, or quotable in the news or the abstract, the paper rarely contains the assertion when it is carefully examined and the limitations of the data and its sources are known.
Sadly my false attribution to Archimedes on Twitter, email and in PowerPoint slides has become a new source of validation for the quote. If you do a Google search of “To measure is to know, Archimedes,” you’ll now find links to my sources and those of several of my friends who mistakenly trusted me to be reliable. It will be hard to correct these and it is likely someday someone else will use this misquote and inappropriately cite me as a source. To those people, I again apologize and hope this correction rises to the top of the Google search.
It can be dangerously self-reinforcing to make assertions in the age of the Internet with its replication and failure to generally reference correctly. This means that those of us who value truth should make those assertions very, very carefully.
So I am updating my signature for a while a new quote and a link to this essay.
“Always check primary sources”
- Paul Wicks, Ph.D.
P.S. - I am fairly comfortable contributing that quote to Paul. Though it is to some degree a common sense concept I think Paul’s use and context are original enough that an attribution is justified. A Google search reveals that that exact wording is only found 443 times (as of Nov 17 2010). The top 30 or so were mostly in long form text and not really in quote style.
Posted by Lori Piscatelli Scanlon | November 5, 2010
Did you know November is Epilepsy Awareness Month? In honor of the month and to help raise awareness of epilepsy, here is the first in a series of blogs about our Epilepsy Community members’ experiences with this disease. To kick us off, let’s meet tonialpha, a three-star member and PRO who recently sat down with us to give the following interview in our monthly newsletter. Read on to hear more about how tonialpha maintains perspective, passes the time and learns from PatientsLikeMe.
* * *
(Amy) What are you most proud of?
(tonialpha) I am most proud of life. Life is environment. It is inside and out! We see the beauty and the turbulence. It is how we see it and take it.
(Amy) How do you maintain perspective?
(tonialpha) I need to review, review, review, review! My perspective of things sometimes leaves me due to stress, letting things overbear my thoughts and mutter my mind. I need to step back, take a walk or go in the bathroom and read, call a friend, text a friend or look in the dictionary when I am confused. Taking a walk outside helps me, when I am alone and can rationalize.
(Amy) What is your favorite hobby or pastime?
(tonialpha)Walking and reading.
(Amy) Tell us the most important thing you’ve learned at PatientsLikeMe.
(tonialpha)I noted stress caused seizure increase, and with less stress, my seizures decreased. My clusters seemed to have relinquished. Also, I have been able to speak to my epileptologist about the frequency easier.
In response to the Wall Street Journal article published last week, we’ve had a lot of great discussions about the role of honesty and transparency. Transparency is about you - members of the PatientsLikeMe community - knowing how we make money and what we do with the data you’ve entrusted to each other and PatientsLikeMe.
To start, the characterization as villain is nicely hyperbolic for a headline, but inaccurate. Villains are dishonest. As a company, we strive to be honest and transparent - both are key parts of our Core Values as an organization. To that end, let us dig in on a few of your recent follow-up questions:
Does PatientsLikeMe sell our identifying data (like name, photo, bio, etc.)?
No. We’ve asked for a correction in the Internet Evolution article because their statement about scraping the names you use to sign up for the site is incorrect. In the BNET article, the author cited our Privacy Policy, which indicates what data patient members can share on their health profiles at PatientsLikeMe. This is not the same as the data we sell. In addition to linking our partners site right off our homepage (where we list out the products sold to partners), we also call out “how we make money” on the front page. Part of this FAQ was cited, but the very important point about “personally identifiable information” is below:
How does PatientsLikeMe make money? We take the information patients share about their experience with the disease, and sell it in a de-identified, aggregated and individual format to our partners (i.e., companies that are developing or selling products to patients). These products may include drugs, devices, equipment, insurance, and medical services. We do not rent, sell or share personally identifiable information for marketing purposes or without explicit consent. Because we believe in transparency, we tell our members exactly what we do and do not do with their data. (Read more)
Is this a “privacy scandal”? To us, it’s not a discussion about whether or not health information should be private. (Don’t get us wrong - that’s an important discussion too, but we’re pretty clear on where we stand on that - see our Openness Philosophy). The issue here is that Nielsen was not given consent of the patients, nor PatientsLikeMe, to scrape information from our site. As we’ve said before, we believe this scraping incident was a violation of our User Agreement and a violation of patients’ trust.
Isn’t PatientsLikeMe doing the same thing as Nielsen? In addition to our User Agreement and Privacy Policy, we also have a moral obligation to our communities to do the right thing. In this case it means: 1) having this dialogue openly and honestly; 2) being selective about the projects we work on and our partners; and 3) contractually obligating our partners not to ‘re-identify’ our patients with our data or other data (which would mean a pharma company would be taking on liability using a service like PeekYou in conjunction with PatientsLikeMe data).
Our site wouldn’t exist if we had to “persuade” you, the patient, to share your data. Many of you find value in sharing; value in that level of openness. What you should expect in return is a level of transparency about what we will and won’t do with your information. We hope we do a good job of providing that transparency. What do you think?
On Thursday October 7, 2010, the PatientsLikeMeOnCall TM podcast is proud to present a new series called “The Patient Voice.” Through these podcasts, you’ll hear emotional and inspiring stories from our community members that demonstrate the type of sharing and positive connections being made by patients on our site and how these connections are affecting their lives.
For the first run in the series, we’ll be focusing on the PatientsLikeMe Parkinson’s community and hearing from members about a very special handmade quilt. A few years ago, members of this community came together online and decided to create the quilt as a fun activity to get them through the winter season. Each patch of the quilt is designed by a different member of the community and demonstrates, in a very personal way, something about the individual and her/his experience living with Parkinson’s disease. Initially a fun passion project, the quilt has become an expression of the power of community. Little did the quilters know how much their project would end up impacting their lives, the lives of other members, and, even beyond that, the lives of people in the Parkinson’s disease community as a whole. This quilt has traveled all over the world; it’s been featured in countless news publications spotlighting our members and their work with Parkinson’s disease; it was spotlighted by the Dartmouth Hitchcock Medical Center in their Health Living & Learning conference brochure; and it was, in part, the inspiration for the Parkinson’s Quilt Project being pulled together by the National Parkinson’s Foundation.
In this five part series, we will be talking to some of the members who contributed patches to the quilt as well as other people who have been touched by the quilt. To get you geared up for this series, here is a quick clip from our interview with PD community member, BrownCat.
The premiere launches this Thursday (October 7th) at 2pm EST with an interview with PokieToo, and the other interviews will run every Tuesday following. To listen to the series, you can subscribe to our iTunes page or you can find our podcasts on our PodBean page. Get ready to be moved by “The Patient Voice”…
Engaging in social media presents a number of uncertainties to pharmaceutical companies. In a world where much of the medical dialog has moved online, these uncertainties have emerged due to absent or unclear guidelines from the Federal Drug Administration (FDA), privacy and regulatory concerns about engaging directly with patients, and the potential for significant consequences.
When I recently spoke before the FDA, we highlighted how our pharmaceutical partners are taking a leadership role by navigating through these issues. In so doing, our partners are learning about real world experiences of patients and how to meet their adverse event reporting responsibilities in the PatientsLikeMe Epilepsy, Organ Transplant and Multiple Sclerosis communities.
“…as the FDA contemplates the Internet and social media as an emerging source of drug safety data, it is essential to consider what characteristics distinguish a social media site as being capable of contributing to drug safety in a meaningful, computable and quantifiable manner.”
Meaningful, computable and quantifiable are three words that underscore all that we do at PatientsLikeMe. This includes the creation of our patient safety program. Early on, we approached patient safety proactively with a pilot program in our Multiple Sclerosis Community. Launched in 2009, this program allows patients to voluntarily report adverse events that funnel to the FDA’s MedWatch system. Our system automatically pulls relevant data from the patient’s existing profile into an FDA 3500 form, dramatically reducing form completion time.
Going beyond that in areas where we work deeply with our pharma clients, we developed an integrated and comprehensive drug safety reporting platform that monitors patient data and free-text for potential adverse events. This data is then medically curated into standard MedDRA terminology and submitted electronically to meet regulatory timelines and reporting criteria. Of note, PatientsLikeMe is the only online health data platform in social media that has passed multiple drug safety compliance audits.
The reality today is that patients are sharing their real-life experiences with post-marketed drugs online. By using structured data collection tools within the PatientsLikeMe platform overseen by a drug safety professional, industry partners can improve patient safety.
This is about more than just compliance, though. We believe it’s about leadership - patients and pharma working together in new ways. Listening - to understand the positive and negative patient experience - is the right step in developing a trusted relationship. And this trust-based relationship is the only foundation upon which to build your social media strategy.
Posted by Lori Piscatelli Scanlon | August 30, 2010
Ever wonder what your fellow members were up to on their sponsored walks and runs in various states across the country? Last week, PatientsLikeMe launched a Flickr page for the PatientsLikeMeInMotionTM program. Now you can see photos of members just like you in motion! We are excited to share the experience of sponsored teams and three-star members with everyone.
Since its inception in 2009, PatientsLikeMeInMotionTM has sponsored more than 115 teams across seven disease communities. With over 2, 100 participants to date, the program has given many members the chance to demonstrate their PatientsLikeMe spirit as well as connect with others who have shared similar experiences.
It’s always great to see how PatientsLikeMe members are just as passionate offline as they are online. Now, everyone can catch a glimpse our members in action from New York to Ohio to California! The PatientsLikeMeInMotionTMFlickr page currently hosts photos from walks in the ALS, MS, Parkinson’s, Transplants, Fibromyalgia and Mood communities…with more to come. We are proud to feature events such as The National MS Society’s “Walk MS” series, ALS Association’s “Walk to Defeat ALS” series, Parkinson’s Unity Walk, and events run by the National Alliance on Mental Illness (just to name a few). Have photos you would like to submit? We would love to see them. Email us.
Thank you to all the members who have contributed their time and photos to PatientsLikeMeInMotionTM. You continue to inspire others. And thanks to all the members of the PatientsLikeMe community for continuing to share.
As you may know from reading Molly’s post last week, a few of us from the PatientsLikeMe staff recently attended the National Kidney Foundation’s 2010 U.S. Transplant Games in Madison, WI. In addition to supporting some of our current nonprofit and industry partners, PatientsLikeMe was an exhibitor at this year’s event. Our goal was to meet as many “Gamers” as possible to hear more about their journeys and to introduce our community where thousands of others are sharing their experiences. (Check out some of the more memorable moments in our photo gallery of the Games on our PatientsLikeMeInMotionTM Flickr page).
If you were a “pin trader” at the Games (a tradition akin to the “trading” that happens at Disney World), you probably walked around with our PatientsLikeMe-branded pin bag hanging from your lanyard or clipped to your belt loop. We gave out thousands of these small blue bags! Or maybe you stopped by the booth to grab a mousepad for a friend, take some leaflets for your clinic or steal a piece of chocolate for an afternoon sugar boost. Regardless of the reason, it was our pleasure to be there and support you in whatever way we could. Below is a video we showed at the booth to help people learn more about our transplants community. (Thanks to our colleagues Aaron and Adam for pulling it together!)
In the middle of day two at the booth, one gentleman stopped by and said to me - “I had my transplant years ago. I don’t really need social support at this point, so, tell me, why would I join a community like this?” And he waited patiently for the answer.
What I love about working for our company is that we don’t pretend to be something we’re not. If PatientsLikeMe is not for you, then it’s not for you. If our site were just a forum or simply a social network, then maybe he’d find little value in joining, and I told him that. But, he listened as I explained why we’re not just a forum. Some recipients still have questions about what they’re experiencing on a daily basis (e.g., “is it normal to still feel fatigue a few years after my transplant?”) and want to find information from patients’ real-world experiences. Other members create profiles to chart their ownhealth over time and share that with their doctors; they may even choose not to interact with other patients. Still, we see many members - just like this gentleman - who had an organ transplant years before and are on our site to share their health journey so that others can learn from it. It’s this generosity in “giving back” that struck us from the first day we opened the doors to our online Transplant Community, and it’s what made the Transplant Games such an overwhelmingly inspirational experience. In the end, it was this generosity that made him say - “Well, good answer. I can jump on that wagon.” All aboard.
Thank you to everyone for doing what you do - online and off - to help raise awareness of organ transplantation and help others learn from your experiences.
At PatientsLikeMe, people with every type of condition are coming together to share their health experiences, find patients like them and learn how to take control of their health. The result is improved care for patients as well as an acceleration of real-world medical research.
Stay tuned to our blog for the latest happenings with our company, our patients and our mission of opening up the healthcare system.
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ALS, Chronic Fatigue Syndrome/ME, Epilepsy, Fibromyalgia, HIV/AIDS, Mood Conditions, Multiple Sclerosis, Openness, Organ Transplants, Parkinson's Disease, Rare Diseases 
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Engaging in social media presents a number of uncertainties to pharmaceutical companies. In a world where much of the medical dialog has moved online, these uncertainties have emerged due to absent or unclear guidelines from the 
