19 posts from June, 2011

Celebrate the Role of Social Media Today

Posted June 30th, 2011 by

Mashable, the pioneering digital and social media news site, has pronounced today Social Media Day. Why? “Social media has changed our lives,” they wrote in 2010, prior to launching the event. “It has not only changed the way we communicate, but the way we connect with one another, consume our news, conduct our work, organize our lives, and much more. So why not celebrate?”

Social Media Day 2011, sponsored by Mashable

Mashable is encouraging everyone who uses social media to take part in the second annual celebration. Some examples including organizing a Social Media Day get together on Meetup, posting photos from your get together on Facebook and using the hashtag “#smday” on Twitter. We would add updating your PatientsLikeMe profile and reaching out to another patient like you to this list of possible celebratory activities.

That’s because, at PatientsLikeMe, we’ve seen how social media has transformed the lives of patients. Before, there was only the information and advice provided by your doctors. Now, you have access to a wealth of real-world experiences and data from patients around the globe. As a result, you can ask smarter questions, make better decisions and take greater control of your own care.

Social media has also helped to accelerate medical research. A stellar example is ALS Untangled, a research consortium that uses social media (including Twitter, PatientsLikeMe, NING and open-access journal articles) to investigate alternative and off-label ALS treatments. There’s also the unprecedented ability to survey and learn from thousands of patients, as R&D Director Paul Wicks discusses in this recent video.

So if social media can help both patients and researchers, it’s worth celebrating, no? Share your thoughts on how social media has impacted your life in the comments section below. (And, yes, that would count as another social media activity!)

Giving Health Statistics a Good Name

Posted June 29th, 2011 by

Mark Twain popularized the notion that there are three kinds of lies: “lies, damned lies, and statistics.” But there’s a cure for bad statistics, and that cure is openness.

When our study of the effects of lithium in ALS was published in Nature Biotechnology, we not only presented the usual background and analysis, but we also included all the data that were used to support the analysis. (The data were de-identified, of course.)

A Chart from the PatientsLikeMe ALS and Lithium Study Published in Nature Biotechnology

This “data openness” was one aspect of our study – as well as the ensuing media coverage in the Wall Street Journal and other outlets – that caught the eye of folks at the National Institute of Statistical Sciences (NISS). They were in the midst of organizing a workshop on observational medical studies (like our study), and they invited PatientsLikeMe to discuss our lithium research there. As one of the study authors, I went to represent PatientsLikeMe and give a talk entitled “Drug Efficacy in the Wild.” (Click here to download a PowerPoint of my presentation.)

Sitting in a roomful of statisticians for two days might be considered a form of torture by some, but it’s the sort of thing I enjoy as a Research Scientist. I look forward to sharing ideas with my colleagues. Besides, the motto of NISS is “The Statistics Community Serving the Nation,” a theme that dovetails nicely with what we’re trying to do here at PatientsLikeMe. We believe it’s through real-world data and statistics that you can put your experience in context as a patient.

Ultimately, the NISS workshop did not disappoint. I heard some interesting talks, and I learned some new techniques for future work. My own talk was well received, and our approach to the lithium analysis was called “refreshing.” There were a few people there who were not yet aware of PatientsLikeMe, and they were particularly fascinated by this new way in which patients could gather information and work together to learn about treating their illness.

Of course, none of this would be possible without you. Your shared data is what drives our research capabilities and helps us all answer the questions that we have about disease. So, as always, thank you, and keep on sharing!

PatientsLikeMe member tvaughan

Calling All Families Affected by Autism

Posted June 28th, 2011 by

Back in April, we wrote a blog post observing Autism Awareness Month. At that time, we had just over 100 members with an autism spectrum disorder (ASD). Now, just two months later, we’re pleased to report that our ASD membership has more than tripled with over 350 members reporting ASD and nearly 100 reporting Asperger’s syndrome.

Do you know someone who has a child with ASD? Currently, patients under the age of 20 comprise the largest segment of our ASD patient membership. As a result, we’ve created a leaflet for parents of children with ASD that explains the benefits of joining PatientsLikeMe as a parent/caregiver.

Click on the leaflet image below for a full-size, printable version:

Leaflet for Parents of Children with ASD (Click for a Full-size, Printable Version.)

Imagine the knowledge and support you could gain from finding other children like your child – or other parents like you. Because when you connect with others like you, you can learn what’s normal. You can see how other families are approaching treatment. Most importantly, you can discuss ASD challenges with people that truly understand.

We look forward to the continued growth of our ASD membership. If you know a family affected by ASD, please pass along this leaflet today.

It’s National HIV Testing Day

Posted June 27th, 2011 by

National HIV Testing Day (NHTD): June 27

Have you been tested for HIV recently? Yes, you.

As we wrote in a recent blog, an estimated one in five people with HIV in the US are unaware of their infection. That “one” could be you or someone you know. So instead of wondering, find out your status today during National HIV Testing Day, now in its 16th year. The message is “take the test, take control.”

Use this online locator to find a screening facility near you, and if you’d like, you can research the various types of HIV tests available beforehand. Depending on the individual facility, you may be able to get rapid results in as short as 20 minutes using a method that involves taking a swab of saliva.

Are you afraid to find out the test results? You are not alone. There are benefits to knowing, however. If you test negative, you can be confident of your status. If you test positive, you can begin receiving specialized care and treatment to help you stay healthy. You can also look to the 2,961 HIV patients at PatientsLikeMe for information and support.

Thirty years after the discovery of AIDS, it’s now possible to live a long, productive life with HIV, thanks to advances in treatment. Take basketball legend Magic Johnson, who took the brave step of revealing his HIV+ status in 1991. As a successful businessman and NBA commentator now in his fifties, he is a poster child for thriving with HIV.

So be brave too – and get tested today.

Putting a Spotlight on Migraines

Posted June 24th, 2011 by

CBS Reporter Serene Branson, spokesperson for National Migraine Awareness Month

In February 2011, CBS Reporter Serene Branson was reporting live at the Grammy Awards when her speech became slurred and incoherent.  As the video soon went viral, many speculated that she’d suffered a stroke or worse.

In fact, Branson had suffered a complex migraine, a special type of migraine with aura where marked neurological symptoms can occur.  In many cases, including Branson’s well-publicized episode, the individual is unaware that anything unusual is happening.

If you didn’t know migraines could cause confused speech or auras, you’re not alone.  That’s why Branson has partnered with the National Headache Foundation to launch the “More Than Just a Headache” campaign during National Migraine Awareness Month this June.  The goal is to educate the public on the personal and societal costs of migraines, which affect approximately 30 million Americans and one out of four women.  In fact, women are disproportionately affected, with three times as many women sufferers.

Migraine Patients at PatientsLikeMe by Age and Gender

Here at PatientsLikeMe, our membership numbers help illustrate this statistic.  With 1,596 migraine patients as of today, 88% of them are women, and 12% are men.  What else can you learn from our migraine patients?  Here are a few quick facts.

What are the top treatments?

What are the major symptoms?

What’s the latest forum question?

Do you suffer from migraines as well?  Share your own “Migraine Moment” to help the Branson and the National Headache Foundation raise awareness about this chronic and debilitating condition.

PatientsLikeMe Announces Video Contest Winners

Posted June 23rd, 2011 by

CAMBRIDGE, Mass. — June 23, 2011 — Today, the health website PatientsLikeMe reveals the winners of its first-ever “Express Yourself” video contest in which members were asked to answer the question – “How has PatientsLikeMe changed your life?”  Congratulations to these top winners chosen across three different categories:

Most Creative Presentation:
tiredoftired of New Jersey for Depression Feels Like

Most Inspiring Story:
tired old me of Delaware for Patients Like Me: Bonnie Tipton

Top Voted (by peers):
Roulette67 of New Jersey for I Am Not Alone

“We were wowed by all of the video entries for this contest.  You can’t watch these and not be inspired,” says Ben Heywood, Co-founder and President of PatientsLikeMe. “These videos not only capture what it’s like to live with a condition like depression or MS, but also encapsulate the true value of sharing your story and experiences with others.”

Chosen to win Most Creative Presentation, the video by tiredoftired uses a mix of powerful analogies (“Depression feels like…walking in an impenetrable fog on a path with no end”) and images to describe how “with all that PatientsLikeMe has offered me, I have come to feel less alone.”

Adds the 28-year old member, “Creating this video allowed me to portray what it means to be depressed and dissolve some of the social stigma of mental illness. Depression isolates even in the most social of settings and therefore a support system is an integral part of recovery, especially when provided by friends and family.”

Multiple sclerosis patient, tired old me (Most Inspiring Story), and bipolar patient, Roulette67 (Top Voted), come face-to-face with the camera to tell their stories.  In describing what she has learned on the site, 44-year oldRoulette67 says – “By sharing, I grow.  By sharing, I learn and experience and evolve…you can’t really do [that] on your own.”

Comments 48-year old tired old me, “I want to say that this contest has been the highlight of this month, which contained too many very deep lowlights! The entire experience was a blast.”

(Click here to view all 6 winning video submissions)

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is where 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. (Follow us: www.twitter.com/PatientsLikeMehttp://blog.patientslikeme.com)

Data Mashups, “Wow Week” and the Fruits of Experimentation

Posted June 21st, 2011 by

Recently, I had the pleasure of helping to represent PatientsLikeMe at the 2nd Annual Health Data Initiative Forum, which is known as “Health Data-Palooza” to its friends.  (See our first blog post about this event here.)

Software Engineer Jeff Dwyer at the 2nd Annual Health Data Initiatives Forum

The forum was conceived as a way to showcase the wonderful things that people are achieving with open government health data, and it was exciting to see the breadth of applications that are being developed. We saw both the real-world efficacy of a system like Asthmapolis, which uses GPS to track where and how often you use your asthma inhaler, as well as Palantir’s mind blowing demo of how to hunt for the source of a food born illness, which I could only describe as “indistinguishable from magic.” Seeing that the federal government is already starting to get results from this kind of open innovation was really heartwarming for me.

We were especially honored to win the “Best in Plenary Award” (aka “Best in Show”) for our recent integration with ClinicalTrials.gov, which resulted in our new clinical trial search feature. As one of the engineers involved in this project, it was really great to see how quickly something like this can come together. PatientsLikeMe has a great culture of encouraging innovation, which is manifested in our decision to declare every sixth week “Wow Week.” During this special week, every engineer has the latitude to experiment with whatever they’d like.  Thanks to the existence of open data sources, there are an amazing number of things we can try without even needing to ask for permission or special access.

One “Wow Week,” PatientsLikeMe Data Analyst and Software Engineer James Kebinger experimented with integrating the listings from ClinicalTrials.gov into our platform. We are committed to using open source tools and data as much as possible at PatientsLikeMe, so James’ idea to pull data from ClinicalTrials.gov was a natural continuation of that philosophy. It took just one more week from there to get to the point where we all realized that this was something that could deliver real value to both our patients and the folks running the clinical trials.

Here is a video of PatientsLikeMe Chairman and Co-Founder Jamie Heywood presenting our new clinical trial search feature at the “Health Data-Palooza” event:

Data mashups have been the buzz for a while now, and there are a number of interesting results that have come out of integrating two large datasets. I think what excited people most about our application was that we found a really clear benefit to patients.  Of course, this wouldn’t have been possible without the comprehensive data found on every patient profile at PatientsLikeMe. We like to think about doing as much as we can for our patients while not having to ask additional questions, and I think this was a great example of succeeding in that aim.

PatientsLikeMe member jdwyer

Turning Stories into Data…and Data into Knowledge

Posted June 16th, 2011 by

How do you make sense of all the information and stories that come with chronic illness? That’s exactly the challenge that the Patient Experience Team has taken on at PatientsLikeMe. Our goal is to create data visualizations that help you gain insight into your health, recognize emerging patterns and learn from one another’s experiences.

Adventures in Data Visualization

Recently, I flew to Seattle to give a talk entitled “Adventures in Data Visualization” as part of the Web App Masters Tour (WAMT). (I’ll also be presenting it again at the final WAMT event in Minneapolis, which takes place June 27-28th.) During my talk, I share our process for translating people’s individual health stories into data – which, unlike text-based stories, are something that can be measured, compared and visualized.

Data visualizations are great at helping people process complicated information quickly and answer questions that can be much harder to answer other ways. For example, is my experience normal? How are my treatments affecting my symptoms? Is my quality of life improving? What happens if I stop taking my medication? With data visualization, you can see patterns that correspond with changes to your medications, lifestyle modifications and more.

Ultimately, PatientsLikeMe is creating a shared visual language that allows your story to be part of a larger story, one that is enriched by data. We are continually working to make it easier for you to learn from the data you share, and that patients like you are sharing as well. Why is this so important? It allows you to put your story in context and find others like you. Ultimately, it allows you to see what you can do to achieve the best health outcome possible.

Have you “seen” something on your profile charts – or that of other patients – that helped you answer your questions? Share your experiences with data visualization in the comments section.

PatientsLikeMe member kbrigham

Let’s Hear What Men Have to Say

Posted June 15th, 2011 by

It’s National Men’s Health Week, and as a follow up to our blog on Monday, we thought you might enjoy hearing the perspectives of four male members of PatientsLikeMe – one with MS, two with Parkinson’s disease and one with HIV. Men may make up a smaller percentage of our 105,000+ patients, but their contributions are far from small.

Member with Parkinson’s disease:

Member with MS:

Member with Parkinson’s disease:

Member with HIV:

PatientsLikeMe and BBK Worldwide Join Forces to Bring Mass Patient Exposure to the Clinical Research Process

Posted June 14th, 2011 by

CAMBRIDGE, Mass. — June 14, 2011 — Today, PatientsLikeMe, the leading online health platform, and BBK Worldwide, a pioneer in healthcare marketing and patient recruitment, announce an alliance to jointly offer their services to pharmaceutical companies and other industry stakeholders interested in enhancing patient recruitment and retention for ongoing and upcoming clinical research studies.

Both companies have a long-standing commitment to raising awareness of trials among patients, as recently underscored by PatientsLikeMe’s award from the Institute of Medicine for its new clinical trial feature and by BBK’s industry-leading research, such as its widely-cited “Will and Why” surveys of global patient attitudes toward participation in clinical studies.

“There’s great synergy in our two companies working together,” says Joan F. Bachenheimer, founder and CEO of BBK Worldwide.  “With our leading clinical trial solutions and PatientsLikeMe’s unparalleled patient engagement platform, we’ll be able to create a steady stream of interested and eligible clinical trial participants for clients with the greatest depth of members’ health information in the industry.”

Adds David S. Williams, Chief Marketing Officer of PatientsLikeMe, “This is a crucial next step in bringing exposure of clinical trials to our members, beyond just giving them access to ClinicalTrials.gov listings on our site.  By partnering with BBK, an established leader in the space, we can now reach many more patients to let them know about potential clinical opportunities that address their specific, unmet medical needs.”

To help expand its targeted patient population for recruitment purposes, the two companies will launch national and regional multi-media campaigns to help drive patients to sign up for PatientsLikeMe, where there are currently 100,000+ patients with more than 500 conditions.  While patients will benefit from sharing their health data and experiences on the site, BBK and PatientsLikeMe will offer industry partners tiered access to interested patient members who meet their trial criteria. Trial sponsors also will be able to leverage the PatientsLikeMe platform and the BBK technological solutions and communications expertise to establish powerful retention programs.

The partners will unveil their patient recruitment and retention program at the 47th Annual Drug Information Association (DIA) Meeting in Chicago, IL next week.

About BBK Worldwide

BBK Worldwide is globally renowned for accelerating time to market for new and improved medicines and treatments by using innovative strategies, programs, and technologies to streamline the clinical trial enrollment process. With offices in Boston, London, Los Angeles, and Osaka – as well as strategic alliance partners in every world region where clinical trials are conducted – BBK Worldwide has evolved into the internationally recognized leader in patient recruitment. BBK continues to reshape its industry by combining its visionary perspective with three decades of experience enrolling thousands of clinical studies in more than 70 countries. www.bbkworldwide.com

About PatientsLikeMe

PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on Twitter.com/PatientsLikeMe and http://blog.patientslikeme.com]

Let’s Talk About Men’s Health

Posted June 13th, 2011 by

Did you know that, on average, American men are more likely to live sicker and die younger than American women? This has been called “the silent health crisis in America” by Dr. David Gremillion of the Men’s Health Network, and it’s one of the startling health statistics for men being brought to the surface during National Men’s Health Week, which takes place this week, June 13-19, 2011.

National Men's Health Week

Today, a special event is being held in Times Square in New York City with racecar drive Terry Labonte and health expert Dr. Harry Fisch to kick off the week. The theme is “Tune-Up Men’s Health,” with both speakers encouraging men to take care of their bodies the same way they take care of their cars. One reason is that women are 100% more likely to see the doctor for annual exams and preventive services than men.

In accordance with this trend, women outnumber men here at PatientsLikeMe. Out of our 106,453 members as of today, only 17,294 of them are men. That’s less than 20% of our membership. Yet in contrast, men die at higher rates than women from the top 10 causes of death, including heart disease, cancer, injuries, stroke, HIV/AIDS and suicide.

So, in recognition of this disparity as well as Father’s Day on June 19th, we’d like to reach out to men today. Don’t go it alone. If you have a chronic health condition, join PatientsLikeMe to share your experiences, find patients like you and learn how to take control of your health.

What Patients Say About Janumet 50 1000

Posted June 11th, 2011 by

Janumet 50 1000 is the brand name (and dosage level) of sitagliptin-metformin, a combination prescription drug used in the management of type 2 diabetes.  (50 refers to 50 mg of sitagliptin while 1000 refers to 1000 mg of metformin.)  In addition to diet and exercise, Janumet 50 1000 is prescribed when the use of metformin or sitagliptin alone does not adequately control the condition.

At PatientsLikeMe, where more than 130,000 patients are sharing their experiences with conditions, symptoms, treatments and more, 21 patients report using Janumet 50 1000 or a lower daily dosage (50 mg sitagliptin / 500 mg metformin).  What can we learn from these patients’ experiences?  Quite a bit, actually, thanks to PatientsLikeMe’s unique data-sharing platform.

Looking at the three treatment evaluations submitted for Janumet, all three patients rate the effectiveness as “Moderate,” while side effects were marked as “Mild,” “Moderate” and “Severe,” respectively.  The chief complaint from the patient who reported “Severe” side effects was diarrhea.  However, she writes, “Blood sugars are going down.”


What about you?  Have you taken Janumet 50 1000 or a different dosage of this combination diabetes medication?  Join PatientsLikeMe and add your experiences to our growing body of knowledge.  Then, stay to exchange advice and support, research common treatments and learn from other patients like you.

Join PatientsLikeMe

Improving the Clinical Trial Process with Shared Data

Posted June 9th, 2011 by

“Today is a day of massive celebration of what health innovators have done,” said US Department of Health & Human Services’ Chief Technology Officer Todd Park this morning as he welcomed everyone to the 2nd Annual Health Data Initiative Forum (or “Health Data-Palooza,” as Park called it). The goal? To create “a self-propelled, open ‘ecosystem of innovation’ using data to improve health,” he said.

Naturally, the open sharing of health data to help patients is something we’re very passionate about at PatientsLikeMe. In fact, it’s our mission. That’s why my brother and fellow co-founder Jamie got up on stage at today’s event to show just how PatientsLikeMe can do that. As an invited speaker, he unveiled our new Clinical Trials feature, which provides customized, real-time listings from ClinicalTrials.gov to help patients find clinical trials that are right for them as well as help companies find patients who are right for their clinical trial.

In today’s press release about this new “matching” feature, Jamie says, “It’s difficult for patients to find trials and for investigators to find patients. We can help solve both of those problems by telling each of our 100,000+ patients what trials they’re eligible for and by showing each trial sponsor how many patients they can reach.”

Below is an infographic that shows the number of clinical trials in one selected region that are now listed on PatientsLikeMe and the many patients nearby who are eligible to take part in these research efforts. The goal, as we see it, is making the clinical trial matching process faster, easier and more accessible.

Clinical Trials Recruiting Near Massachusetts and the Patients Eligible for Theme

PatientsLikeMe member bheywood

National Cancer Survivors Day: Meet a True Survivor

Posted June 8th, 2011 by

National Cancer Survivors Day - A Celebration of Life
National Cancer Survivors Day was recently celebrated on June 5th. According to the organization behind it, the purpose of this annual event – now in its 24th year – is to “show the world that life after a cancer diagnosis can be meaningful and productive.”

To help illustrate this inspiring message, we’d like to share an interview with TysabriSept08, a survivor who continues to work and thrive while battling both multiple sclerosis (MS) and breast cancer.

1.  Tell us about your first diagnosis with breast cancer in 1999.

Well, I was annoyed and pissed. I already had MS. Didn’t exactly like losing a breast. I could not have reconstruction with an implant because of immunosuppression. Any drug I took for MS would lower my immune system, making infection more likely. I was not about to go through all the surgery needed to use my own body tissue. Slender, I do not have any to spare.

Also, I had to work and did not want a long recovery period. I had the mastectomy on a Tuesday and was back on the lecture platform the next Wednesday. I did not do chemo or radiation because it would have negatively affected the MS. We even minimized the surgery time and used a special anesthetic, which was easier on my already crippled nervous system. I did not even continue with Tamoxifen. It made the MS much worse so I quit after less than two months.

2.  Last year, your breast cancer came back.  What was that like?

TysabriSept08, A True Survivor

Actually, cancer came back twice. First in 2007. We waited a year (very low CA 27 29 levels) and the cancer was isolated to a small same side chest wall lump – free moving. By 2008, a year later, it had grown a little. Still very low CA 27 29 levels. I had the lump removed under local anesthesia – piece of cake. We kept the incision to a minimum (less concerned with those borders.) I did five days of localized pin point radiation via a Linear Electron Accelerator – calibrated to miss muscle, bone lungs – to take care of cancer cells at those borders.

Another lump appeared in June 2010 – popped out over night! It was about 1/2 inch from the 2007 lump! More local anesthesia to remove it – then 10 days of pin point shallow radiation – same machine! However, my CA 27 29 levels started to rise, and they are now through the roof. There is a lot of cancer running around in my body. I am asymptomatic. The cancer seems to not be landing anywhere.

3. How are you dealing with your breast cancer now?

The breast cancer is now metastatic. It can never be got rid of or cured. My treatment is palliative – we remove lumps, minimal radiation. I have not gotten any new lumps. I am asymptomatic and feeling fine, cancer-wise. I think the cancer has not landed anywhere because of my very high Vitamin D3 levels. My levels were 177 in March. I cut back a bit and, as of May 6, my levels were 120. Oops, I got vertigo – so I am back to my previous Vitamin D3 doses – about 6-8,000 IUs per day. See our Vitamin D3 Megadose Thread [in the Multiple Sclerosis Room]. We did some brilliant research on D3 and MS. Later, we found that D3 is also an anti-cancer agent.

Are you a cancer survivor as well? Have you found supplements or alternative treatments that have helped you too? Share your experiences in the comments section.