sharing

Flickr-ing PatientsLikeMeInMotionTM

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 PatientsLikeMeInMotionTM Flickr 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 …

Flickr-ing PatientsLikeMeInMotionTM Read More »

Patients like me declare our health data rights

“We the people…have the right to our own health data.” That’s part of a collective new Declaration of Health Rights, officially unveiled tonight on the newly launched HealthDataRights.org. It is time to turn the conversation from fear and privacy to sharing data and finding new treatments and better care. The Declaration represents reality that what we are doing does not work and does not serve the patient, and this reality is being declared tonight simultaneously via blogs by all stakeholders in healthcare.  I recently wrote about how sharing is a right.  This Declaration articulates these inalienable rights, as it provides a straightforward definition of health data rights to ensure the flow of meaningful data.  We are that much closer to getting you, the patient, at the center of the health system. This started with a simple conversation; a conversation about sharing data between two health systems that spurred additional conversation and more.  In the end, so many of us agreed that what we need to do is let the data flow and the information become meaningful. Our collective goal is to ensure that healthcare gets better, quality is improved, and yes, treatments are developed faster.  That is what we stand …

Patients like me declare our health data rights Read More »

Sharing Is A Right As Well

We do not live our lives alone. We live our lives in collaboration with others. We communicate our needs and our goals, and together we work to achieve them. This is exceptionally true for families and individuals dealing with illness. Whether you’re dealing with depression, or pain, or perhaps the fear and stigma of HIV, or the impairment that comes from MS, Parkinson’s or ALS, what helps us the most is when those around us reach out and share their support and advice. You would think that your ability to share would be as much your right as speech, but is it? It’s not clear that is true in healthcare today, nor is it clear that such a right will be protected tomorrow. Privacy is also a right – a right to not share what you do not want shared. It’s a fair and just expectation that the doctors and clinicians you employ to support you in your illness will not share your information without your permission. Today, I fear that privacy has become much more than a right; it has become a goal. When that happens, people begin to find ways to make it difficult to share in the …

Sharing Is A Right As Well Read More »

Introducing “The Patient Voice” – First up? Inpatient Therapy

Today’s patient has a loud and strong voice.  At PatientsLikeMe, we hear you.  You’re saying, “I know this disease, I know how it acts in the real-world, and it’s time to share that with others.” With thousands of patients sharing data and experiences every day on our site, we’ve decided to launch a report that takes what you, the patient, knows and shares it with you, the patient community at-large.  For obvious reasons, we’re calling it The Patient Voice. The Patient Voice is a collection of wisdom, sentiments and experiences shared by patients like you regarding important issues you face today.  The reports include PatientsLikeMe member tips, suggested checklists and questions to ask yourself, and real-world patient experiences, as well as some fun facts from about the PatientsLikeMe community. The first report is from our Mood Conditions Community, representing patients with depression, anxiety, bipolar, OCD and PTSD, on the topic of inpatient therapy (or hospitalization).   It’s a topic that comes up quite a bit in our forum, and patients are openly sharing their positive (and negative) experiences with one another.  We’re now sharing some of the positive experiences with you.  Take a look at the free report and let us …

Introducing “The Patient Voice” – First up? Inpatient Therapy Read More »

Fibromyalgia Awareness Day 2009

Did you know that yesterday was Fibromyalgia Awareness Day? The PatientsLikeMe Fibromyalgia community is growing exponentially with more than 3400+ members just five months after its launch!  Many  of our members are feeling newly empowered by their membership in our community and are attending events, wearing pins and ribbons and taking the time to spread awareness about what it’s like to live with fibromyalgia. This sharing mirrors the sharing they do on the site. At PatientsLikeMe, members build their profiles by sharing information about their condition, such as symptoms and treatments.  Top treatments cited to date include rest, heating pads, walking, stretching and the drug Lyrica.  The most commonly listed symptom is pain, followed by fatigue, memory problems and lower back pain.  In addition to sharing health information, patient members also share their personal experiences and tips with each other.  In our forum these past few months, patients have discussed all kinds of topics, including finding the right doctor, coping with pain and fatigue and how to explain how they really feel to their friends and family. With all this sharing, patients are learning more about themselves, helping each other better understand this condition, and improving their overall quality of …

Fibromyalgia Awareness Day 2009 Read More »

Sharing to Feel Better

Sharing.  It’s a concept we all learn at a very young age.  Oftentimes reminisced as happening in the sandbox, we think back to our young selves giving up what we hold most dear (in this case, some cheap plastic toy) to allow someone else to benefit from it.  It seems so simple and obvious, but how many toddlers do you know that immediately give into the concept…easily handing over that toy without a moment of hesitation or a slight tug back or possibly the more extreme screaming tantrum?   Over time, what happens is that the more they share, the more they see it puts a smile on their friends’ face, or gives them something in common to “chat” about. You don’t need to be clairvoyant to see where I’m going with this.  Sharing is at the core of PatientsLikeMe, and it’s what makes our communities so special.  More than 32,000 patients are online sharing something they hold dear — details about their health — so that others can see it, learn from it, and dialogue about it.  It’s truly inspirational and something we believe is transforming healthcare as we know it. But sharing doesn’t have to stop there.  From a …

Sharing to Feel Better Read More »

Patients Like Me Can Run 13.1 Miles With Fibromyalgia

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. Yes, Patients Like Minnie can run 13.1 miles! For more inspirational videos from our fibromyalgia community, visit www.youtube.com/PatientsLikeMeFibro.

Voices of Fibromyalgia: Patient Video

As we end the year, we give you the last 2008 video from PatientsLikeMe and the first of our new fibromyalgia community.  We asked this newly launched community to tell us “How are you overcoming fibromyalgia?”  This is what they had to say: Thanks to all of you who contributed your “voice” to this video.   It’s truly a reflection of patients helping patients live better every day.  We look forward to hearing more voices in 2009! Happy New Year!

Structuring and Presenting the Patients’ Perspective at AMIA

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 …

Structuring and Presenting the Patients’ Perspective at AMIA Read More »

Health 2.0: Where do we go from here?

A few nights ago, I was honored to give a keynote at the second Health 2.0 Northeast 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 …

Health 2.0: Where do we go from here? Read More »

Scroll to Top