What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our January edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up to recently, and if you are member who’s not opted in to the newsletter, sign up today.
MONTHLY MUSINGS
Have you been told, “But you don’t look sick”? You’re not alone. In our November newsletter, we mentioned how many of you use “The Spoon Theory” to describe the realities of your condition to others. From MS to fibromyalgia to depression, “The Spoon Theory” has become such a popular analogy that it has its own forum tag.
The idea is that patients living with a chronic illness have only a small number of spoons to use each day. As a result, they must carefully choose how they expend their energy, as each task or effort costs one spoon. If they use up all their spoons too early, that’s all they can manage for the day. The drawer of spoons is empty.
If you’ve found “The Spoon Theory” helpful in getting friends and family to understand, you may be interested to hear there’s a new (and quite humorous) companion analogy called “The Fork Theory,” developed by MS member OldSalt. Unlike spoons, forks are not something to cherish, but the very things that cause you pain and discomfort. Every day, the forks poke you, get in the way and pose challenges. You can try to put them in a drawer, but they’ll always return when you least expect.
Can you relate to this notion of “battling forks” throughout your day? If so, perhaps your friends and family can too.
The new Tools section (found in your profile sidebar) contains some oldies but goodies like your 3-Star Guide and Doctor Visit Sheet. But it also has some new additions like Patients Like Me. This is where you can see a match up of all the patients who are like you and explore their recent activity. It’s also the easiest place to find new members to follow. (Looking for even more people to follow? Invite Others to join PatientsLikeMe.)
Patients like you with life-changing conditions have to make choices every day, just like anyone else.These choices, however, typically have more at stake than how to RSVP to a party or even whether to walk away from an “underwater” home.For patients like you, your lives may be at stake.
I have watched my mother deal with three different types of cancers for more than 25 years, and the choices she had to make for me and my siblings to be successful were stark.As a single mother with a doctorate and two master’s degrees, she had to take jobs that paid less because cancer limited her energy.She took on enormous debt because she wouldn’t let her illness stop her from giving her children a private school education.Those choices started from physical and emotional hardship, then led to economic hardship.
Patients like you – and like my mother – have conditions you didn’t ask for, and your ability to keep a job and maintain economic stability isn’t just based on your talent or training, but also in your management of your conditions.Brought on by infection, age, genetic pre-disposition or unknown causes, these conditions factor into every choice, every decision—and in my mother’s case, which job to seek.We all make choices each day, but patients like you often have to choose between living well and just living.
One of the most important choices for patients like you is how to treat your disease.With your health care team, you try to make the best choice with the given information.The problem is information is scarce, untrustworthy or impersonal.That’s right, impersonal.What is a miracle treatment for one person could land another in the hospital. At PatientsLikeMe, we try to shine light on the information that can help each of you reach your best outcome.This is why we don’t just provide aggregate information, but allow you to access the profile of a person who is taking a medication to see if that person is “like you.”
The figure below speaks to the choices patients like you have to make about your treatments in a world with imperfect information.The chart depicts thousands of patient evaluations of efficacy and tolerability among major therapies across our 22 represented conditions.What jumps out immediately?That treatments for HIV and Parkinson’s are both more effective and easily tolerated than others out there for other diseases.Hundreds of millions of dollars have been devoted to research in those areas, and it’s paid off.Many believe Parkinson’s has a cure in sight, and HIV has, in less than 30 years, become a manageable chronic condition rather than a death sentence.
But what if you have other conditions?You are clearly making a choice between efficacy of the medications and the side effects that come with them.While aggregated data is great for directional insight, PatientsLikeMe is designed to let you drill down deeper.You can ask each person taking the treatment how it works for him or her.Why?Like everyone, you trust people like yourself who are going through or have gone through the same experiences.Only patients with similar situations can give you specific insight into what tradeoffs need to be considered when potentially trying a new medication.How will it affect my sleep?Is there daytime fatigue or “down time”?Can I operate heavy machinery?Will this treatment impair my ability to work in my profession?
These are the questions many of you are asking.These are the choices you make every day.My mother made her choices and has lived to see the fruits of her sacrifice.If we at PatientsLikeMe are going to help each of you answer the question, “Given my status, what is the best outcome I can hope to achieve, and how do I get there?”, then we have to continue to show the benefits of openly sharing information with each other.We have to excel at illuminating the real-world efficacy and risks of all kinds of treatments, and we have to help you connect with patients like you in a way that you get personal answers to your questions.
The more data you choose to share, the more we can all make the world of treatment information less imperfect and more personal.Simply stated, we’re all in this together.
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!
Posted by Lori Piscatelli Scanlon | February 6, 2009
13.1 grueling miles. A half marathon. Running that distance for anyone is a challenge that takes months of training and dedication. Imagine running that distance having fibromyalgia.
My close friend and PatientsLikeMe member, Minnie Lee, has fibromyalgia and courageously ran in the Surf City Half Marathon last Sunday. This wasn’t even her first time running it. She has dedicated herself to running and finishing half marathons and triathlons despite her disease. Pain or no pain, Minnie finishes.
PatientsLikeMe was there to sponsor and encourage Minnie to achieve her goal: finish in under 3 hours. “I run because so many people can’t,” says Minnie breathlessly through tears after crossing the finish line. Supported by close friends Shirley Huang and Lilian Tham, Minnie finished strong despite the pain.
PatientsLikeMe members share health data on the site adding their own individual-level health experience to a repository of structured outcome data. The result? An unprecedented data set that informs medical conversation not only within the patient community but also with the larger scientific one.
Earlier this fall, the venue for this conversation was the annual meeting of the American Medical Informatics Association (AMIA). Typically, AMIA is a forum for medical researchers to discuss clinical-facing informatics projects like electronic medical records, doctor decision-support systems, and standards. This year, the event agenda included its first-ever panel on patient collaboration, with PatientsLikeMe presenting on how our members use informatics systems to spearhead original research.I presented a paper co-authored with Michael Massagli chronicling the activity on the ALS site regarding the site-based evaluation of Lithium. Questions about the paper were enthusiastic and challenging as medical researchers contemplated the full implications of patients conducting research outside of the healthcare system. The most provocative comment came from Danny Sands of Cisco who introduced the possibility that while he saw the value of PatientsLikeMe, we may also be “polluting clinical trials” – when patients with rare diseases take experimental treatments before being enrolled in (his) randomized clinical trials. My response was that he and others in the clinical trial world may feel differently if someone he cared for was diagnosed with ALS – a disease where patients have limited time to explore treatment options. As medical researchers, we should be proud of our patients who are taking an active role in their health care; I know I am.
The truth is, whether practitioners discuss it or not, people have long experimented with novel, off-label, and alternative treatments (some with and some without their physicians). Barring the few cases that are published in academic journals, these individual efforts only resulted in a tiny group of people learning anything from their experience. By organizing these individual efforts, PatientsLikeMe allows the data to be pooled and recorded systematically for analysis.
Of course, randomized clinical trials (RCTs) are the most rigorous means to systematize experimentation, but they have their draw-backs. They are expensive to run, time consuming (they take years, our study took months), and may be subject to more confounds than their organizers would like to believe.
While coordinated patient-led research on PatientsLikeMe is new, and as such presents novel challenges in its methods and credibility, we have now glimpsed its promise, its potential. Lithium was a first effort to study one treatment in one condition; it is just the beginning. There are many other treatments being used listed on the site by our patients that are not – for a variety of reasons – being studied systematically anywhere else. For example: Low Dose Naltrexone (LDN), Stem Cell Transplants in ALS, 4-Aminopyridine (4-AP), Botox injections to manage excess saliva, etc. These demand our attention.
Regarding the Lithium experiment, one patient described the situation better than I ever could in this forum post: “This is an amazing process. Instead of sitting on the sidelines searching for promising research we are for the first time ever (from what I can determine) taking a group of people with a particular disease and taking an active role in researching a treatment.”
PatientsLikeMe’s members are not only learning how to best care for themselves, they are contributing their otherwise anecdotal experience to a body of data. Motivated by their own desire for better outcomes, patients are reporting directly to the website and building a body of evidence not being collected anywhere else. Together, with our carefully designed tools to capture, display, discuss and analyze this data, we are creating a repository of patient reported outcomes that will add patient data to evidence-based medicine and advance our knowledge. Isn’t that what it’s all about?
Posted by Lori Piscatelli Scanlon | October 10, 2008
A few nights ago, I was honored to give a keynote at the second Health 2.0Northeast conference held right here in our Cambridge, MA backyard. It’s exciting to see old friends and new emerging start-ups coming together to try and make a dent in the $2 trillion industry that is healthcare in the U.S. In the world of Health 2.0, we have a lot of great opportunities to impact healthcare in a positive way, including shaking things up and putting patients back at the center. With so many new and promising companies emerging in the space (many in attendance at the Boston event), we have to start thinking about what happens next. How can we really make change, and what changes need to be made?
I believe we, as the eHealth community, need to focus on two major goals: 1) solve patients’ problems, and 2) create business models that allow us to do #1. The PatientsLikeMe business model is straightforward. We build online communities where patients share structured information about their disease to help themselves and others. In turn, we make money by selling that data. We are open with our patients about how and why we sell this data (and specifically what data we sell). They understand this exchange and they’re all for it. “Sell, sell, sell” someone recently wrote in a discussion about our business model. Why? Because they know our goal in selling is to help pharmaceuticals companies, medical device companies, healthcare providers, and others in the industry learn more about patients. We’re giving those companies the kind of information that can help improve the products/services they’re creating for patients.
I don’t want to prognosticate about what types of business models will work for all Health 2.0 companies as the industry evolves (because, ultimately, this is an evolution). It’s up to each company to figure that out. I do believe that there’s no wrong path when you keep both those goals in your sights. Help patients, and create business models to do that. Moving forward as a company and as an industry, that’s exactly what we need to do. Now let’s get back to work…
Posted by Lori Piscatelli Scanlon | October 1, 2008
Last Friday (September 26, 2008), our Co-founder and President, Ben Heywood, was honored at the Boston Business Journal “Champions in Healthcare” award ceremony. Ben was one of two recipients recognized in the Innovation category. These regional awards highlight outstanding individuals and companies from the Boston-area who are making a difference in healthcare, including winners across five categories (Administrators, Community Outreach, Employers, Innovators, Nursing and Physicians). Here is the full list of honorees.
Held at the Charles Hotel in Cambridge, the event was kicked off with a keynote address by Harvard Medical School’s Dr. Leonard Zon, an internationally recognized pioneer in the fields of stem cell biology and cancer genetics. Next, Boston Business Journal’s Editor, George Donnelly, and Lisa Vanderpool presented each honoree with an engraved, crystal award in front of a room full of colleagues, family members and friends. The winners were also profiled in a special edition of the paper last month (August 15, 2008).
It’s truly an honor for our company to be spotlighted in this way, particularly in our own “backyard,” which happens to be populated with some of the best and brightest healthcare professionals and companies around. In his thank-you remarks, Ben touched upon his personal experiences that has brought him here, and thanked his team and the community. He said it best - “I share this award with the other two co-founders, my brother Jamie and our friend Jeff Cole, and our incredible team…Last but not least, I have to thank the patients. Without them, we wouldn’t be here.”
Posted by Lori Piscatelli Scanlon | September 24, 2008
You’ve spotted us again! This weekend, PatientsLikeMe was a proud sponsor of the AIDS Walk/Run at Grant Park in Chicago on September 20, 2008. The event, benefiting the AIDS Foundation of Chicago and 70 other local organizations, brought together more than 7,000 people on this warm, sunny day to show their support in the fight against HIV/AIDS. Together, participants raised a projected $400,000 for AIDS-related services.
David Williams, Catherine Brownstein and I were at this event, and we were thrilled to meet so many great people, including one of our current members. As we saw at the AIDS Walk in Boston, there were an overwhelming number of support groups and organizational leaders there dedicated to helping patients.
The PatientsLikeMe HIV community, in particular, was met with great enthusiasm. Our booth visitors loved that we had social networking components on the site, but were more excited about the patient profiles and treatment reports. We displayed sample profiles to show how members can chart their treatments, symptoms and outcomes (like CD4 counts and viral loads), and use that information to find others exactly like them. Many people had heard of websites that offer a place to chat with others, but this health data-sharing approach was new and interesting to all. Let’s just say heard a lot of “wows,” which is always exciting and validating for us.
If you’ve been following our blog, you’ll notice that we’ve been out and about quite a bit this Fall spreading the word about PatientsLikeMe. We’ve exhibited and presented at many events, including the Young-Onset Parkinson’s Network Conference, DBSA Annual Conference, MS Challenge Walk and now the AIDS Walk Chicago. We hope those we’ve met will find their way to our site, and share their stories, their health data, and their passion for advancing the knowledge of these conditions.
PatientsLikeMe was recently one of the sponsors for the 2008 MS Challenge Walk on Cape Cod, a three-day, 50-mile event held on September 5-7, 2008. More than 620 walkers participated, each raising a minimum of $1,500. Overall the event raised close to $1.4 million to benefit Multiple Sclerosis (MS) education, support, advocacy and research.
The walkers persevered through some very nasty weather during parts of the walk. Fortunately, the last day was a spectacular early Fall day in New England, as the event ended with the parade of walkers onto the Hyannis common.
We had the chance to talk to many participants over the course of the three days, and showed them how PatientsLikeMe can help them share their health data and experiences and learn from others. We showed them a public member’s profile to demonstrate how they could use enter treatments, symptoms and outcomes and chart the course of their disease over time. They were also very excited to see how this information is aggregated in our Treatment Reports. Whether they wanted to share their positive experiences with a specific treatment, or were looking for more information about a newly considered treatment, walkers definitely saw great value in our treatment report/evaluation system.
This event is also where our MS quilt made its public debut. The quilt, made up of individual squares created by many of our charter MS members, brings home the support aspects of the site. It highlights some of the people who have helped create and grow the site into one of the largest and most vibrant MS communities online today, with more than 7,600 members from around the world. The process of actually creating the quilt also represents what PatientsLikeMe is about: pulling together patients’ experiences and data in a way that allows both the individual and comprehensive view of the disease.
This was an inspirational event. It was rewarding to learn first-hand from people about the challenges they face dealing with MS, and to offer them a resource where they can find and learn from others going through similar challenges.
While I spent most of my time at our sponsor table answering questions about PatientsLikeMe, I overheard other attendees discussing a concept I found very interesting. A talk called “I Am Not My Illness: The Importance of First Person Language” by Stephen Propst prompted a lot of discussion from attendees about the distinction and power of saying “I am bipolar” versus “I have bipolar.” He noted that people with other conditions do not say “I am cancer” or “I am diabetes” and that the language we use has the power to change how we think about the intersection of our health and our identity.
As I listened to people hashing out the details and implications of being more thoughtful with our language, I thought more about how it relates to the collective power of peers. Face to face conversations are a time-tested method for empowering others and making change, but having conversations online can magnify your message far beyond a two person discussion. Having read over 2000 threads in our Mood community in the last 7 months, I know that our members empower one another on a daily basis. While a single forum thread may have 20 replies, it can be viewed by hundreds of people, escalating the impact of the conversation far beyond its participants. Add to that the ability to see each person’s status from their shared health data profiles, and everyone has the opportunity to learn in multiple ways on PatientsLikeMe.
This single lecture sparked great conversations among the few hundred folks who attended the event, and now the conversation is continuing with our members. Empowering patients through conversations and shared data is producing real change: that’s the power of peers.
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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minimum of $1,500. Overall the event raised close to $1.4 million to benefit Multiple Sclerosis (MS) education, support, advocacy and research.
