14 posts from February, 2012

Rare Disease Day: Together, We Can Do More

Posted February 29th, 2012 by

All Around the World, People Are Observing Rare Disease Day Today

Today is the fifth annual observation of Rare Disease Day, an international event recognized in more than 50 countries.  (Learn about US activities here, including a day of lobbying on Capitol Hill for the ULTRA Act, which aims to stimulate the development of treatments for rare diseases.)

What’s a rare disease, you ask?  It’s a condition that affects less than 200,000 people in the US – or less than 1 in 2,000 people in Europe.  There are more than 7,000 such disorders (80% of which have identified genetic origins), and collectively, they affect an estimated 350 million people worldwide.  Yet because of the lower prevalence of the individual diseases, they often receive little attention.

The 2012 Rare Disease Day theme is “Solidarity,” highlighting the importance of collaboration and support among patients with rare diseases.  Despite the wide variability of symptoms, patients with rare diseases face many of the same challenges, which may include a difficult diagnosis process, isolation, high cost drugs (if they exist), lack of information and inequities in the availability of treatment and care.

At PatientsLikeMe, we are committed to bringing patients together and speeding up the pace of medical research.  That’s why we partnered with the R.A.R.E Project last November to find and connect one million patients with rare diseases.  “It’s terrifying to think you’re alone and manage your rare illness with a doctor who might not have ever seen another patient like you,” says PatientsLikeMe Co-Founder Jamie Heywood.  “We will change that.”

If you know anyone with a rare disease, please encourage them to join PatientsLikeMe and help create a well-defined patient registry for the benefit of both patients and researchers. Also, PatientsLikeMe members—with or without a rare disease—can show solidarity by following the R.A.R.E Project’s profile.


A Peek at the February Newsletter for Members

Posted February 27th, 2012 by

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our February 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

Ever feel like you’re so busy seeing specialists that it’s easy to forget about your annual physical?  In addition to checking up on your overall health, an “annual” is a great time to monitor your blood work – such as cholesterol and Vitamin D levels – which you can now record on your PatientsLikeMe profile.  It’s also a good opportunity to discuss any new concerns with your primary care physician (PCP).

But with only a few minutes with your PCP and a whole year’s worth of health matters to cover, it can be hard to remember what’s happened between visits, and even harder to get to everything that’s important. Fortunately, your printable and customizable Doctor Visit Sheet (DVS) can help.  Bring this complete record with you to jog your memory and get your doctor updated quickly.

You Can Even Email Your Doctor Visit Sheet to Your Care Team Before Your Appointment

The DVS now includes your InstantMe history along with all the helpful notes you’ve made about things like treatment changes and new or repeat symptoms.  Bottom line: the more you use InstantMe, the more details you’ll have about how you’ve been feeling – and why.

Are you due for an “annual”?  Customize and print your DVS here.

Kate, Emma, Liz, Jeanette & Sharry

Kate"" Emma"" Jeanette"" Sharry""

JOIN THE CONVERSATION

What’s happening in the forum?  Check out some of these active threads below.  Then jump in with your own questions and answers.

Need help with something on the site?  Visit the PatientsLikeMe Site Help Room for answers from veteran members.

PUTTING THE “INSTANT” IN INSTANTME

A Screenshot of the InstantMe Survey (Which Asks "How Are You Feeling?") on Your Smartphone

Did you know there’s a mobile version of InstantMe that’s now available for iPhone, iPad and, most recently, Android users? We hope it’s a convenient way to record how you’re feeling on the go – whether you’re in the line at the store or watching your child’s soccer game.  Stay tuned as we continue to improve Mobile InstantMe in 2012.


E-Patient Dave’s Top Internet Resources

Posted February 23rd, 2012 by

Blogger, Author, Keynote Speaker and Cancer Survivor E-Patient Dave, Also Known as Dave deBronkart

We first introduced you to E-Patient Dave – a well-known blogger, author and keynote speaker in the healthcare space – last summer.  Given our similar views on many health matters, we see a lot of E-Patient Dave at the conferences and events we attend.  Case in point, our President and Co-Founder Ben Heywood was on a panel with him at the Military Health System Conference just a few weeks ago.

For this particular “high-speed” panel, each speaker was given just 12 minutes to share their story.  So what did E-Patient Dave do?  Exactly what any good digital age citizen would:  he covered the important things and then directed people to his website to find all the related websites and resources.  Given that he’s a cancer survivor and e-patient advocate who believes in “letting patients help,” we were curious what links E-Patient Dave recommends for others who are seeking to take control of their health and join the e-patient movement.

Here’s a sampling of Dave’s top resources along with a brief description:

All About the E-Patient Movement, and Its Founder, Dr. Tom Ferguson (“Doctom”)

Other Resources for the Budding E-Patient

(See Dave’s full list of resources here.)

What about all of you e-patients out there?  Do you have any Internet resources that other patients should know about?  Share your own recommendations in the comments section.

p.s.  In December, E-Patient Dave stopped by our office to talk to the team during our weekly Journal Club luncheon.  Stay tuned for a podcast of what he shared with us.


Information Wants to Be Free

Posted February 22nd, 2012 by

This Editorial by our R&D Director, Paul Wicks, PhD, Was Published in the Scientific Journal Clinical Investigation.  Click to Read the Full Article.

(This post has been repurposed from an article written by PatientsLikeMe’s Paul Wicks for the scientific journal Clinical Investigation.)

But when it comes to clinical trials, can we afford to let it be?

“Information (or data) wants to be free” – so goes the mantra of hackers and data activists. In the past this meant computer geeks hacking into secure private networks to fulfill their own curiosity or liberate secret knowledge. Today, voluntary “data liberation,” as practiced by governments and corporations, is relatively commonplace and semiorganized groups with data freedom agendas, such as Wikileaks and Anonymous, have entered the mainstream consciousness.

For me, it feels increasingly challenging to delineate the margins where free data is good or bad. A highly networked, mobile-enabled popular uprising is considered a “revolution” when it’s against an oppressive regime, but considered a “menace” when it is a disenfranchised mob rioting in a western democracy. Bravely recorded videos of civilians attacked by autocratic regime military forces are essential in prosecuting crimes against humanity, but videos leaked from within a democratic military are a “threat to national security.” So while data itself may want to be free, we don’t always want it to be. And so, to clinical trials.

The Clinical Trials Search Feature at PatientsLikeMe

From a societal perspective, the requirement for any trials conducted in the USA to register on ClinicalTrials.gov can only be a good thing in preventing past sins, such as suppressing negative trials or changing end points. As the US government makes this data open, it also allows repurposing. For instance, PatientsLikeMe imports the complete dataset from ClinicalTrials.gov every night to let our membership know (free of charge) about the 30,000+ active trials for which they may be eligible. So far, so good. But what if even more clinical trial data were free?

Read the rest of R&D Director Paul Wicks’ editorial in Clinical Investigation here.

PatientsLikeMe member pwicks


How Heart Attack Warning Signs Differ in Women

Posted February 21st, 2012 by

A heart attack is unmistakable, right?  Not exactly.  And especially not if you’re a woman.

Elizabeth Banks in "Just a Little Heart Attack"

We kicked off February by recognizing National Wear Red Day and sharing a hilarious video created by actress Elizabeth Banks for American Heart Month.  In the short piece, a harried working mother begins having strange symptoms one morning, including tightness of the jaw, dizziness, nausea, shortness of breath, muscle pain and pressure on her chest.  Despite all of this, she remains more concerned about getting her husband and kids off to work and school, respectively.  Her son is the only one to recognize what’s going on, saying “Mom!  I think you’re having a heart attack.”

Part of 2012 Heart Month message is that the warning signs of a heart attack for women can be different than for men.  Unlike the stereotypical image of a man clutching his chest and falling down, heart attacks may appear less dramatic in women.  For example, a woman can experience a heart attack without severe chest pressure (“an elephant sitting on my chest”).  Also, women are somewhat more likely than men to report more subtle symptoms such as back or jaw pain, shortness of breath and nausea/vomiting.  The danger is that even when the signs are subtle, the consequences can be deadly.

The Key Statistic Behind This Year's American Heart Month

Would you be shocked to have a heart attack?  That’s what many women report – that they never thought it could happen to them.  As a result, they assume their discomfort must be something more routine like the flu, acid reflux or normal aging.  They also may downplay it in order to put their family’s needs first.  Don’t make this mistake.  A heart attack strikes someone every 34 seconds, and heart disease is the number one killer of women.  So if you think you or someone you love might be having a heart attack – even if the symptoms are subtle – don’t wait more than five minutes before calling 911.

Beyond knowing the warning signs, a little prevention (such as quitting smoking or walking just 30 minutes a day) goes a long way.  Learn your heart attack risk – as well as how you can lower it – with the American Heart Association’s Risk Calculator.


Behind Every Piece of Data Is a Patient

Posted February 17th, 2012 by

(This post has been repurposed from an article written by PatientsLikeMe’s Ben Heywood for eyeforpharma’s Patient’s Week 2011.)

PatientsLikeMe Co-Founder and President Ben Heywood

Real-world, patient-reported data is becoming more important to you, the patient, as well as everyone in healthcare. One source of that data is patient registries.

According to the US Department of Health & Human Services’ Agency for Healthcare Research and Quality (AHRQ), a patient registry is “a database of confidential patient information that can be analyzed to understand and compare the outcomes and safety of health care.” Ultimately, the goal of capturing and analyzing this data (shared by multiple sources like hospitals, pharmacies, physicians and patients) is to learn from one another and improve healthcare. Like registries, PatientsLikeMe understands the importance of capturing data in a meaningful, computable and quantifiable way.

However, behind every piece of data is a patient.

So, in the spirit of putting patients first, we began thinking about the next generation of a patient registry where you benefit in real-time from what you share. It would need to be a situation where you could openly share longitudinal demographic and clinical data about your disease while using online tools to improve your outcomes. It couldn’t be just silos of health data focused on one disease at a time; it would need to encompass data on all diseases and inspire you to share information about those co-morbidities too.

If this next generation of a “registry” could ensure long-term data sharing, can you imagine how much meaningful insight would be available for patients and industry alike? We could…and that’s what we’ve been building at PatientsLikeMe for the last five years. We’re excited about what that means for patients like you each day, as well as what it means for the future of medicine.

We know you believe in community—we’ve seen it in your one-for-all mindset where you can share what you experience and see the same for every other patient like you; a mindset where you expect us to then pass on those experiences to researchers, companies and others who want to learn together and improve healthcare. When we tell you how we make money (by sharing your de-identified data with our trusted partners), many of you have said, “Great. Share! Share! Share!”

We have no doubt that sharing is the essential ingredient in accelerating research, ensuring patient safety and making better treatments. As we look beyond the chat room and beyond the traditional patient registry, we see a world where patients like you are openly sharing meaningful, computable and quantifiable data with each other to make your lives better…and, in turn, making all of medicine that much better too.

Can you see it too?  Tell us your thoughts on what the ideal patient registry should include.

PatientsLikeMe member bheywood


A Day in the Life of Research Assistant Shivani Bhargava

Posted February 15th, 2012 by

What’s it like to work at PatientsLikeMe?  We are continuing to reveal just that with our monthly blog series “A Day in the Life,” which features various employees from different departments.  So far, we have profiled Research Scientist Mike Massagli and User Experience Engineer Cris Necochea, and today, we share our interview with Research Assistant Shivani Bhargava.  Unlike Mike and Cris, who are both company veterans, Shivani offers the perspective of a more recent hire.  Find out what it’s been like for her to jump in and start her career with our team.

PatientsLikeMe Research Assistant Shivani Bhargava at Moss Beach, California

1.  What convinced you to join PatientsLikeMe?

I was recruited right out of undergrad in the Spring of 2010. I was just beginning my job search and a previous employer pointed me to this fantastic startup in Cambridge, MA. It took five…maybe ten minutes to fall completely in love with the website and realize I wanted to help contribute. I really liked the idea of a completely unique healthcare company that was using a creative business model to actually improve healthcare by putting the patient voice first. After two interviews, in which I’m almost positive Paul Wicks and Sally Okun took pity on my bumbling college student enthusiasm, I started working for PatientsLikeMe!

2.  Tell us what it’s like to be part of the Data Operations Team.

Health Data Integrity is the name of the game. And that’s exactly what we do. We make sure that patient data is entered accurately and according to the intentions of the patients themselves. Things have sure gotten more interesting since the expansion of the site to include every condition, but it’s been an educational and enriching process. It’s normal to find us simultaneously working with a diverse number of patients and various medical ontologies and online resources to carefully map the patient vocabulary against an existing clinical one.

It’s also humbling to work with such a qualified team. Between PharmD’s and RN’s, we’ve got degrees and years of experience galore. In fact, I’m the only one with just a mere BA! Everyone on my team continues to amaze me daily with their expertise and ability to work through tough problems. If you put all our heads together, we’re pretty much an unstoppable force at PatientsLikeMe.

3.  What research projects are you working on at the moment?

One of the big things we’re working on as a team is trying to build a medical framework using patient-reported data. Since one of our goals is to map a patient vocabulary, we’re trying to infuse the mountains of enormous data that our users provide with structure and organization, similar to existing medical ontologies. The potential benefits of this would be endless. Overall, it would help research and patient empowerment, and it would allow clinicians to better understand the patient experience.

Of course, it’s not an easy task. Imagine trying to invent an entire language with rules, categories and syntax with just a tiny, yet brilliant team!  Okay, well, maybe it’s not quite like that.  We do, after all, have the help of an online information revolution where we can easily access clinical resources.  Also, we have at our disposal the insightful and diverse patient community at PatientsLikeMe. And because of that, it’s a challenging project that continues to be dynamic and make progress. Look out healthcare systems!

And that is ultimately why I love working at PatientsLikeMe. We’re really out to change the face of the healthcare system and maybe not just here in the states, but internationally too!

4.  How would you describe the PatientsLikeMe work culture?

Well, between free lunches during Journal Club on Fridays [where a different speaker talks to the entire team each week], ping pong breaks in the afternoons and the LEGO station in the engineering pit, it’s hard work. Clearly not meant for the stiff, traditionally-minded laborer at heart.

Kidding aside, the startup environment and more specifically the PatientsLikeMe atmosphere makes working here not at all like work. It’s normal to have impromptu discussions or meetings about new ideas or problem-solving strategies. People are productive here. You are constantly working on new projects, new goals and new aspects of the site, which makes sense given the constantly evolving nature of the website. Everyone brings valuable perspective to the table and together we’re building something that all of us believe in as a cause.

That’s the biggest thing. We’re not a non-profit or a charity organization. We’re a business…with a rather noble and innovative product. And that really lies at the crux of our amazing work culture.

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Interested in making a difference in patients’ lives?  Check out our Careers page to see our current job openings.  Headquartered in Cambridge, Massachusetts, PatientsLikeMe is looking for a Community Moderator, Marketing Associate, Research Client Manager and more at the moment.


Have a Heart Today. Become a Donor.

Posted February 14th, 2012 by

Registering to Be a Donor Is About Giving Life to Another

February 14th is Valentine’s Day.  But it’s also National Donor Day.

Started in 1998 by the Saturn Corporation and United Auto Workers in cooperation with the US Department of Health and Human Services (HHS), this annual event is focused on five points of life:  organs, tissues, marrow, platelets and blood.  All of these can be donated to help save and/or improve the lives of others.

Here are a few numbers that help underscore the need:

  • 112,945 people are currently waiting for an organ transplant
  • 18 people will die each day while waiting for a new organ
  • 1 organ donor can save up to eight lives

Does your driver’s license indicate that you’re a donor?  If not, and you want to give others a second chance at life, sign up to be a donor today.  Worried you’re too old?  Don’t be.  The condition of your organs is more important than your age, and there are only a few absolute exclusions (such as HIV infection, active cancer and systemic infection).  So don’t rule yourself out when there’s a chance you could help.

Finally, there is a particular need for minority donors.  While organs are not matched according to race/ethnicity, there is a greater likelihood that compatible blood types and tissue markers – the critical elements of the matching process – will be found among members of the same ethnicity.  Thus, a greater diversity of donors could potentially increase access to transplantation for everyone.

A Snapshot of the Organ Transplant Patients at PatientsLikeMe

Are you awaiting an organ transplant – or the recipient of one?  Join PatientsLikeMe to connect with others like you.  We have hundreds of transplant patients among our members, including those with (or awaiting) a heart transplant, kidney transplant, liver transplant, lung transplant and pancreas transplant. What’s it like to go through transplantation? Read our recent interview with kidney transplant recipient and type 1 diabetes patient Michael Burke.


What Do You Know About Age-Related Macular Degeneration (AMD)?

Posted February 9th, 2012 by

February is AMD/Low Vision Awareness Month, sponsored by Prevent Blindness America.  Affecting part of the back of the eye called the macula, age-related macular degeneration (AMD) can cause the center area of your vision to become blurry or wavy.  It can also create a blind spot right in the center of your vision.

As the name implies, your risk for AMD increases as you age.  Affecting more than two million Americans, AMD is the leading cause of vision loss for Americans age 65 and older.  That’s why it’s critical that you get a dilated eye exam every 1-2 years, even if your vision seems perfectly fine.  Just like glaucoma, signs of AMD – such as a straight flagpole seeming slightly curved or wavy – may be easy to miss at the beginning.

February Is Age-Related Macular Degeneration (AMD) and Low Vision Awareness Month

The cause of AMD is unknown, but risk factors include age, race, smoking, family history, cardiovascular disease and hypertension.  Diet may also play a role according to the University of Illinois Eye and Ear Infirmary.  For example, high fat intake (from meats, margarine, dairy products and baked goods) is associated with an increased risk of AMD, while people who eat fish (high in omega-3 fatty acids) more than four times a week have a lower risk of AMD than those who consume it less than three times a month.

Think only seniors have macular degeneration?  The data at PatientLikeMe suggests that it’s not just something to think about in your sixties and older.  Of the 56 patients who report macular degeneration at PatientsLikeMe, 39 of them (approximately 65%) are under the age of 60.  What are they doing to prevent further vision loss?  Some of the commonly reported treatments include the prescription drug Avastin as well as dietary supplements such as Zinc and Vitamin E.  (Click each treatment name to see how our patients rate the effectiveness, side effects, cost and more.)

Don’t let life get wavy on you.  If you’re overdue, have you scheduled your next dilated eye exam?


NFL Player Steve Gleason’s Inspiring ALS Story

Posted February 7th, 2012 by

Learn More About Steve's Advocacy Organization, Team Gleason

Did you catch the pre-game show before Sunday’s Super Bowl XLVI?  If not, you missed a beautiful NBC piece about Steve Gleason, who spent seven seasons as a safety with the New Orleans Saints.

Diagnosed with ALS a year ago, Gleason now walks with a cane, and his speech has been impacted.  The new father remains upbeat, however, and has thrown his energy into ALS advocacy work through Team Gleason.  (One recent project: bringing two ALS patients to the Super Bowl to fulfill their lifelong dream.)

Tune in below for the full NBC profile, which includes an interview with Steve, 34, and his wife, Michel:

Steve’s story reminded us of two topics covered on our blog last year.  During the NBC piece, Michel states that one of her biggest fears is Steve losing ability to speak.  This devastating aspect of ALS recently came up in our interview with ALS blogger Rachael, who discussed how important her eye gaze system (which translates eye movements into words) has been since losing her speech.  She says, “It allows me to converse on an almost level footing, conveying thoughts and observations, expressing myself in my own style with all its complexities and idiosyncrasies.”

Finally, Steve is another example of an athlete being diagnosed with ALS, just like baseball player Lou Gehrig, who is indelibly associated with the disease.  The NBC piece explores the potential connection between impact sports and neurological diseases.  Other researchers, such as Dr. Martin Turner, are investigating a possible link between ALS and athleticism in general.  Check out our post “ALS and Athleticism:  What Have We Learned?” to hear more about Dr. Turner’s research and how PatientsLikeMe data on ALS handedness (i.e. which hand is dominant) has contributed to it.


New Quality of Life Index and More for Psoriasis

Posted February 6th, 2012 by

Are you one of the roughly 700 patients with psoriasis at PatientsLikeMe?  We’ve got some exciting new features just for you.

A Sample Graph Produced by Taking the Dermatology Life Quality Index (DLQI)

At the end of 2011, we unveiled the Dermatology Life Quality Index (DLQI), a new 12-question survey that helps you measure how psoriasis affects your day-to-day life.   Answer the questions regularly to produce a graph (see above) showing how things are changing over time.  That way, you’ll be able to see how various treatments and interventions are impacting your quality of life.

Instructions on How to Measure Body Surface Area (BSA)

Another new feature is the Body Surface Area (BSA) lab test, which measures the percentage of your skin affected by psoriasis.  Not sure how to approximate that?  Your palm (including fingers) represents about 1% of your body surface area, so use that as a proxy.  How many palms would equal the area of your body affected by psoriasis?  If it’s 15 palms, for example, that would be equal to 15% of your body surface area.

The Profile Icon or "Nugget" for Psoriasis Patients

Finally, if you have listed psoriasis as your primary condition (and more than 350 of you have), you may have noticed that you have a brand new patient icon or “nugget.”  It displays your latest DLQI and BSA scores as well as your age, gender and latest InstantMe status (e.g. “Very good” in the example shown to the left).

So, what do you think of these new features?  Have you tried them out?  We’d love to hear your thoughts and feedback.


Are You Decked Out in Red Today?

Posted February 3rd, 2012 by

We are!  Check out the PatientsLikeMe team members who donned red items (everything from ties to scarves to dresses) in support of National Wear Red Day.  Here’s to increasing awareness of heart disease – the number one killer of women – in 2012.

The PatientsLikeMe Team Showing Our Support for Women's Heart Health

Stay tuned for more about cardiovascular health throughout February, which is Heart Month.  That means it’s time to not just draw and cut out heart shapes for your Valentine – but to think about the organ that pumps our blood and keeps us alive.


Wear Red Tomorrow for Women’s Heart Health

Posted February 2nd, 2012 by

Friday, February 3, 2012, Is National Wear Red Day

Did you know that heart disease kills more women than all cancers combined?  And that it’s largely preventable?

Now you do – and there’s something you can do about it.  Participate in National Wear Red Day® tomorrow, February 3, 2012.  Better yet, get your friends and co-workers to dig into their closets as well.  Together, you can make a vibrant, high-impact statement with your sea of red.

Another easy way to show your support is to “Like” the Go Red for Women page on Facebook.  Everyone who becomes a fan will receive a free red dress pin to wear every year for this important event.  Want to get inspired to do more?  Watch comedic actress Elizabeth Banks in the short film “Just a Little Heart Attack” below.

Learn more about the risks of heart disease in women here.  And if you’ve already been diagnosed with a cardiovascular condition – such as cardiomyopathy, coronary artery disease or valvular heart disease – don’t go it alone.  Join PatientsLikeMe to share and learn with others like you.

National Wear Red Day® is a registered trademark of the American Heart Association and the US Department of Health and Human Services (HHS).


Thriving Against Expectations: Ben Heywood’s Moving TEDx Cambridge Talk

Posted February 1st, 2012 by

Last November, we shared our takeaways from TEDx Cambridge, a one-day event featuring 30+ speakers and lots of Ideas Worth Spreading (TED’s mission).  The theme for this particular gathering was “Thrive.”  How can we as individuals – and communities – not just survive but thrive?

One of the speakers to take a crack at that question was PatientsLikeMe Co-Founder and President Ben Heywood, who talked about the story behind PatientsLikeMe.  In addition to sharing how it all began with his brother Stephen’s diagnosis with ALS, and what PatientsLikeMe is trying to do (“a revolution of openness”), Ben focused on how we can thrive as a company against big expectations – both external and internal.

Tune in to the video below to find out just that.  Congrats to Ben on an inspiring talk – not to mention his standing ovation!