64 posts in the category “Media Coverage”

Putting Psoriasis on the Map for World Psoriasis Day

Posted October 29th, 2012 by

Today, October 29th, is World Psoriasis Day, sponsored by the International Federation of Psoriasis Associations.  Here in the US, the National Psoriasis Foundation has created a special website – WorldofPsoriasis.com – for the occasion that illustrates the global nature of this chronic autoimmune disease, which affects 125 million people worldwide or nearly three percent of the world’s population.

WorldofPsoriasis.com's Interactive Map of Psoriasis Patients Around the Globe.  Click Each Red Pin to Find Stories, Photos and Videos.

Now those living with psoriasis and psoriatic arthritis can “get on the map” by adding a clickable pin for their location that shares their personal stories and photos.  The goal is to get psoriasis patients everywhere to proclaim “I have psoriasis” while also learning about others like them around the globe, such as Arvin O. Ravalo from the Phillipines, Saraswati Gautham from Nepal and Dr. Andres Felipe Jiminez Morales from Columbia.

What are the physical and emotional challenges of psoriasis?  Earlier this year, PatientsLikeMe interviewed four members who are blogging about life with psoriasis in order to shed light on this highly visible and often misunderstood disease, which affects as many as 7.5 million Americans and is the most common autoimmune condition in the US.  Check out our insightful interviews with:

  • Lissa of “Psoriasis Girl’s Point of View”
  • Alisha of “Being Me in My Own Skin”
  • Jessica of “Jessica and Psoriasis”
  • Joni of “Just a Girl with Spots”

Common Psoriasis Symptoms Reported by PatientsLikeMe Members.  (Click Through to See the Full PatientsLikeMe Condition Report.)

These four brave ladies are just the tip of the iceberg, however.  2,470+ patients are sharing their experiences with psoriasis at PatientsLikeMe – including how it affects their quality of life and what percentage of their body is affected – while 840+ patients are sharing about their psoriatic arthritis as well.  Get to know our growing psoriasis community and check out the results of our recent psoriasis patient survey about the impact of summer weather.  Also, don’t miss our upcoming blog post about the five different types of psoriasis!


PatientsLikeMe Featured on Bloomberg TV

Posted October 15th, 2012 by

On October 9th, Bloomberg TV aired a four-and-a-half minute “Innovators” segment profiling PatientsLikeMe’s journey as company.  Filmed partially in our office in Cambridge, Massachusetts, the piece features PatientsLikeMe Co-Founder and Chairman Jamie Heywood as well as Ed Sikov, a PatientsLikeMe member with Parkinson’s disease.  Our thanks go to Bloomberg’s Nicole Lapin for her in-depth coverage of our evolution into a data-sharing platform that, as she puts it, “functions more like a clinical trial.”

Visit our Press page for other recent PatientsLikeMe media highlights.

Watch the Bloomberg TV profile below:


World Heart Day: Taking Prevention to Heart

Posted October 1st, 2012 by

Did your heart beat a little faster this weekend?  This past Saturday was World Heart Day, sponsored by the World Heart Federation.

World Heart Day 2012

Founded in 2000, this global event was created to educate the public about heart disease and stroke, the world’s leading cause of death, claiming 17.3 million lives each year.  What’s a major concern is that these numbers are rising.  By 2030, it’s expected that 23 million people will die from cardiovascular disease each year – which is more than the entire population of Australia. The main message of World Heart Day is that at least 80% of premature deaths from heart disease and stroke could be avoided if the main risk factors – tobacco, unhealthy diets and physical inactivity – are addressed.   That means that the way you live is inextricably tied to the health of your heart.

Children Are a Major Focus of World Heart Day

Children are a particular concern for the campaign as kids often have little control over their environment, lifestyle and food choices.  Unless families around the world prioritize a smoke-free home with healthy meals and regular exercise, the children of today are going to be at increased risk of cardiovascular disease later in life.  How can you help today’s kids have a strong hearts and a healthy future?  Check out the Kids on the Move Toolkit and Superheart Cartoon Leaflet for Kids to learn how you can put together a customized program for your family, school or community.

Like many health conditions, heart disease may not cross your mind until a human face is put on the disease, especially a face that looks like you or your loved ones.  That’s why the World Heart Federation is collecting personal stories via short conversations in person or by phone.  If you’ve been affected by heart disease or stroke, learn how you can participate in this global project.  Your story can help both world leaders and fellow community members focus on heart health with greater urgency.  We also encourage you to exchange support and tips with PatientsLikeMe members who have experienced a heart attack, stroke, high blood pressure, valvular heart disease or other cardiovascular conditions.

Speaking of individual stories, check out our interview with Alan, a PatientsLikeMe member who’s living with congestive heart failure (CHF).


The Ride of His Life: An Interview with Prostate Cancer Survivor Wayne Sticha

Posted September 7th, 2012 by

“I wanted to share my story to, frankly, save other men’s lives.  I discovered that very few knew anything about [prostate cancer].  Even less had had the PSA test.”

Wayne Sticha, 64, Founder of Ride for Dads

Over the summer, we shared two interviews with PatientLikeMe members conducted by our partner Patient Power:  one with psoriasis patient Lissa and another with multiple sclerosis patient Marcia.  Today, against the backdrop of National Prostate Cancer Awareness Month, we’re pleased to present the latest Patient Power video interview with member Wayne Sticha, a prostate cancer survivor from Lindstrom, Minnesota.

Check out Wayne’s interview to learn about his prostate cancer experience as well as how he was inspired to found Ride for Dads, an annual benefit and awareness motorcycle ride now in its third year.  What drives his passion for educating other men, who he says “tend to ignore the subtle signs of aging,” about prostate cancer?  And what are his aspirations for this growing event?  Hit “play” below to find out.

Wayne Sticha: Prostate Cancer Survivor Turned Advocate from Patient Power® on Vimeo.

Stay tuned for a post featuring one of Wayne’s photos from the 2012 Ride for Dads as well as the next installment of the Patient Power interview series.


PatientsLikeMe and Merck Establish Health Information Collaboration Focused on Psoriasis

Posted August 15th, 2012 by

Patient-Based Research Aims to Produce New Insights Into Most Common Autoimmune Disease in U.S.

PatientsLikeMe announces it has entered into a collaboration with Merck, known as MSD outside the United States and Canada, to evaluate the impact of psoriasis on patients and to inform a novel approach to improving outcomes.

“A broader and more human view of psoriasis will help patients and their doctors understand the true nature of the disease,” says Ben Heywood, President and Co-founder of PatientsLikeMe. “We’re excited to collaborate with patients and Merck to uncover insights about the disease that may lead to better approaches for patients managing their condition day-to-day; providers creating care plans; and researchers developing treatments.”

According to the National Psoriasis Foundation, psoriasis is a non-contagious, chronic, autoimmune disease that appears on the skin and is associated with other serious health conditions including diabetes, heart disease and depression. It is estimated to affect over 7.5 million people in the United States.

“Effective use of health information provides the path forward to patient-centered care and personalized medicine,” said Dr. Sachin H. Jain, Chief Medical Information and Innovation Officer, Merck. “Our collaboration with PatientsLikeMe is an important part of Merck’s strategy to establish and apply innovative solutions that improve disease management and enhance the patient experience.”

Under the agreement, PatientsLikeMe will work directly with Merck’s clinical researchers and epidemiologists to analyze and interpret psoriasis patient-reported data.

PatientsLikeMe has an active community of psoriasis patients, where nearly 2,000 people share data and stories to reveal what it’s like to have the disease and what they do to treat it. Health profiles, forum postings and journal entries highlight their experiences, and a new survey reveals how the summer season affects them physically and emotionally. Go to http://plmjoin.com/psoriasis to learn more.

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.]


Know Thyself. Quantify Thyself.

Posted August 13th, 2012 by

Are you someone who likes to track things about yourself?  For example, do you keep an exercise log of how many reps you did – or a food journal that details what (and how much) you consumed?  Do you monitor your health and disease progression at PatientsLikeMe?

Quantified Self

If so, you might not know it, but you are part of the growing Quantified Self (QS) movement.  Also known as “Body Data” and “Life Hacking,” the QS movement was started by Wired magazine editors Gary Wolf and Kevin Kelly in 2007.  The idea is to increase self knowledge through self tracking.  More specifically, QSers use technology to record data on various aspects of human life, from “inputs” (food, air) to “states” (moods, blood oxygen levels ) to “performance” (mental, physical).

The hub of the movement is http://quantifiedself.com/, an online community where QSers can share their methods and learn from what others are doing.  In addition, QSers get together face-to-face for regular Show&Tell meetings in various cities around the world as well as an annual conference, which takes place this September in Palo Alto, California.  According to the website, the conference is a “working meeting” for users and tool makers looking to collaborate on self-tracking projects and explore the potential effects of self-tracking on society.

Larry Smarr, Founding Director of the California Institute for Telecommunications and Information Technology (Calit2) and Professor of Computer Science and Engineering (CSE) at the University of California at San Diego.  Photo Credit: Grant Delin, The Atlantic.

For many QSers, such as astrophysicist-turned-computer scientist Larry Smarr, self-tracking conveys huge benefits.  According to this fascinating profile in The Atlantic entitled “The Measured Man,” Smarr sees it as a tool for battling obesity, defeating incurable diseases (in his case, Crohn’s disease) and revolutionizing healthcare.  He’s got a good reason, too:  this is a man who monitored his own blood work and detected an inflammatory state in his body long before his first Crohn’s symptom appeared.   While some people feel that with enough data every person could find something wrong with their health, Smarr argues that it’s far better to detect that something’s “beginning to go wrong” and seek “preventative maintenance,” just like you would with an automobile.

It’s a striking analogy.  Could we as human beings extend our lives – just as we extend the lives of our cars – through data tracking and “tune-ups”?  It’s one of the big questions at the heart of the QS movement.  But as far as we’re concerned here at PatientsLikeMe, self knowledge – as well as shared knowledge – is always a good thing.  That’s why we’ve developed tools to help you measure your disease progression (e.g. our Multiple Sclerosis Rating Scale), track how your treatments impact your quality of life, monitor over 200 lab results (e.g. Vitamin D, cholesterol, PSA levels) and record how you are feeling day-to-day (our InstantMe survey).  Better yet, we help you share that data with other patients like you, so that everyone benefits and learns.

What do you think?  Has “quantifying yourself” led to any breakthroughs for you?


What Is Big Data?

Posted July 25th, 2012 by

Can Big Data Put Patients on Top?

Big data” is being discussed in the media quite a bit these days.  But what exactly is it?

Generally speaking, it’s a data set that’s extremely large and complex, thus requiring advanced technology to turn it into meaningful insights.  Yet there’s a good reason to try to collect and interpret it.  Simply put, big data can reveal correlations and trends that you couldn’t spot otherwise.  As a result, it has the potential to greatly enhance our understanding of disease, crime, traffic, economics and more.

At PatientsLikeMe, where more than 200,000 members are sharing data on their symptoms, treatments and conditions, we’re a perfect example of big data in action.  That’s why our team is constantly working on developing the tools needed for you and fellow members to learn from the data that you’re all sharing about your condition(s).  Ultimately, our goal is to empower you with the real-world knowledge and big data needed to make informed decisions and achieve the best health outcomes possible.

Want to learn more about the big data movement?  Check out this roundup of recent articles discussing how big data is poised to transform the health care industry:

Big Changes Are Ahead for the Health Care Industry, Courtesy of Big Data
Fast Company, June 18, 2012

Big Data Can Save Health Care—But at What Cost to Privacy?
The Atlantic Weekly, May 25, 2012

The Health Care Industry Turns to Big Data
BusinessWeek, May 17, 2012

Health Care Is Next Frontier for Big Data
Wall Street Journal, January 19, 2012

What do you think about the excitement surrounding big data?


PatientsLikeMe in the News: A Roundup

Posted July 18th, 2012 by

Check out some of the media outlets that have highlighted health social networks recently – including PatientsLikeMe and our members.

Social Media a Godsend for Patients with Rare Diseases
PatientsLikeMe is highlighted as a good example in this Chicago Tribune article.

Medical Innovation Needs Silicon Valley Speed, Stat
Fast Company cites us for providing “unprecedented levels of feedback on side effects.”

PatientsLikeMe in the News.  Photo courtesy www.stockfreeimages.com.

How Social Networks Enable Patients to Be More Involved in Their Healthcare
PatientsLikeMe is “at the heart of this shift,” according to this Guardian (UK) article.

Telemedicine Tackles Mental Health Treatment
Our InstantMe survey of how you’re feeling is called out in this Information Week piece.

Match.coms of Clinical Trials Make It Easier to Connect Patients, Researchers
We’re spotlighted as one of the “matchmaking” services that could expedite research.

To see more PatientsLikeMe media coverage, visit our Press page.   To read other articles about Health 2.0 and join the discussion, follow this Twitter hashtag.


What We’re Reading at PatientsLikeMe

Posted July 2nd, 2012 by

Here are some of the media items that grabbed our attention recently.

What Air Traffic Can Teach Us About Kidney Transplants
Air traffic rules balance fairness and efficiency. Can organ waitlists do the same?

Open Access Is Not for Scientists.  It’s for Patients.
A guest blog post by our R&D Director, Paul Wicks, for the Public Library of Science.

What We're Reading at PatientsLikeMe

Snake Oil?  Scientific Evidence for Health Supplements
A very cool health data visualization from Information Is Beautiful.

Facebook Urges Readers to Add Organ Donor Status
Are you going to add your organ donor status?

Glenn Close:  Let’s End the Stigma Around Mental Illness
A great look at how we discuss mental illness – and the impact our words can have.

What are you reading?  Share your recommendations in the comments section.


PatientsLikeMe Adds Three New Executives to Its Leadership Team

Posted June 28th, 2012 by

New Appointments Cap Active Year, Solidify Team for Strategic Growth

PatientsLikeMe, the leading health data-sharing website, announces the appointment of three new executives to its leadership team.  The company, which recently expanded its website to invite patients with any disease, makes this move to focus on expanding the collection and use of real-world disease knowledge to improve patients’ personal experiences and health outcomes.

PatientsLikeMe President and Co-founder Ben Heywood comments,  “Our new teammates—Michael, Sebastiaan and Jeremy—have the operational and leadership experience we need to help guide our strategic growth. I’m excited about the foundation we have built, and about the positive impact we’ll have on patient care, now and for many years to come.”

The following executives round out the PatientsLikeMe leadership team, led by Heywood and his brother, Co-founder and Chairman Jamie Heywood:

  • Michael Evers, Executive Vice President of Marketing
    A consumer and technology marketing expert, Evers joins the company to spearhead business to business marketing and member acquisition. Before joining PatientsLikeMe, Evers was Global Vice President of Marketing for Artfact, the world’s leading live auction software and services provider, and earlier President of BroadMap, a provider of industry-leading geographic data products. Evers’ geospatial industry experience started at TomTom in 2005, where he was the Global Vice President of Marketing and Business Development for the company’s Tele Atlas business unit. Evers has also held senior positions at Motorola and AOL Time Warner.
  • Sebastiaan Foppema, Executive Vice President of Business Operations
    As lead of the newly-formed Business Operations team at PatientsLikeMe, Foppema manages the business development, client services, research and health data integrity team. Most recently, he served as Senior Vice President of Provider Sales and Operations at NaviNet, a healthcare communication network that connects 70% of U.S. physicians with the leading health plans in the country. Prior to NaviNet, Foppema worked for a number of consulting companies in Europe and the U.S. He also formed a healthcare consulting practice in the Boston area, focused on payers and providers.
  • Jeremy Gilbert, Head of Product
    A seasoned business development and innovation professional with expertise navigating the healthcare value chain, Gilbert leads product strategy and development efforts at PatientsLikeMe. Immediately prior to joining the company, Gilbert was an Engagement Manager at McKinsey & Company’s healthcare practice, where he led strategy and execution projects for Fortune 500 clients. He is also a co-founder of four technology startups, and has invented and launched notable products in e-commerce, mobile and discovery bioinformatics. A true technologist, Gilbert has developed software since the age of seven and spent more than 14,000 career hours in software design and construction.

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]


Women’s Health Week: “It’s Your Time”

Posted May 14th, 2012 by

Ladies, we know your lives get busy.  So why not pull out your calendar or smartphone right now and see if you’re due for a visit to your health care providers?  You’ll be doing your part for National Women’s Checkup Day (observed today, Monday, May 14th), an annual event that’s part of National Women’s Health Week.

It's National Women's Health Week

Checkup Day encourages women to get regular checkups that are vital to the early detection of heart disease, diabetes, cancer, mental illnesses, sexually transmitted infections and other conditions.  The reason is simple.  Women often serve as the caregivers for their partners, children and parents. As a result, their own well-being can be secondary at times.  The theme of National Women’s Health Week 2012 – “It’s Your Time” – speaks to the fact that women need to prioritize their own health as well.

Not sure what preventative screenings are recommended for you?  Check out this handy chart organized by age group.  Then take the Checkup Day pledge along with women around the country to get at least one recommended screening during May. If you’re concerned about cost, you should know that all recommended preventative screenings – such as mammograms, colon cancer screenings, Pap screenings and well-woman visits – are now covered by your insurance plan with no out-of-pocket costs.

Join the 2012 WOMAN Challenge and Get Healthy for Good

But scheduling an appointment may just be the first step.  If you’re looking to get healthy in 2012, why not do it with the help of a community?  The 2012 WOMAN Challenge offers an online platform for tracking your nutrition goals and daily activity.  The challenge is to follow through with planned nutrition changes and be active 30 minutes a day, at least five days a week, for six out of eight weeks.  Register here to get started.

If you’re a woman living with a health condition, you can also find a community of women right here at PatientsLikeMe.  We have 70,995 female members who are sharing how they are managing more than 1,000 different conditions, including fibromyalgia, endometriosis, menopause, infertility and postpartum depression.  Take control of your condition with the help of women just like you today.


Jamie Heywood Is One of Hacking Work’s 100 Great Disruptive Heroes

Posted May 1st, 2012 by

Learn More About Hacking Work's 100 Great Disruptive Heroes

How do you define a disruptive hero?  Here is Hacking Work’s three-pronged filter:

  • Disruptive because they are proving conventional wisdom wrong.
  • Heroes because they are changing the rules of the game, for the better.
  • Great because they helped to change us all for the better.

Given these demanding criteria, we are pleased to announce that Hacking Work has recognized PatientsLikeMe Co-Founder and Chairman Jamie Heywood for disrupting the accepted rules of the medical world.  How did his upbringing encourage him to ask questions?  Why does he believe it’s possible to both challenge and respect the healthcare system at the same time?

Find out that and much more in this thought-provoking interview:


PatientsLikeMe Named One of Lead411’s “Hottest Companies in Boston”

Posted April 18th, 2012 by

PatientsLikeMe Is a 2012 Hot Company

Is it getting hot in here?

Earlier this month, corporate research firm Lead411 announced its 2012 “Hottest Companies in Boston” awards, which recognize the fastest growing technology companies in the Boston area.  The award selection process started with over 1,776 companies and was narrowed down to the top 62.  We were one of them!

Headquartered in Cambridge, Massachusetts, PatientsLikeMe is honored to have been recognized, and we congratulate all of our fellow award recipients.  Check out the press release to see the full list of honorees and learn about the award criteria.  And in case you’re wondering, yes, we’ve had to turn up the A/C since becoming a “hot company.”


Spotlighted Blogger: Psoriasis Patient Alisha B. of “Being Me in My Own Skin”

Posted April 16th, 2012 by

Psoriasis Blogger Alisha B. of "Being Me in My Own Skin"

Welcome to the latest installment of our “Spotlighted Blogger” series.  So far, we’ve interviewed patient bloggers living with gastroparesistype I diabetesbipolar I disorderParkinson’s disease and ALS, and today we introduce Alisha B., who felt alone in her struggles with psoriasis until “coming out” on her blog, Being Me in My Own Skin.

Alisha is currently participating in the WEGO Health Activists Challenge, which encourages health bloggers to write 30 posts in 30 days during the month of April.  To make it easy, WEGO sends out a daily theme to tackle.  Alisha has risen to the occasion and produced inspired posts such as “Dear 16-Year-Old Me” and “I Do This for One Reason.”  How has blogging changed her?  Find out that and more in our interview below.

1.  Tell us about growing up with psoriasis – the physical and emotional impact.

Growing up with psoriasis was not an easy battle.  I was not only dealing with the regular stuff like puberty and body image, but throwing psoriasis in the mix made it a lot tougher. I’ll be honest, confidence was not something I had very much of as a child. Although, I was not a depressed child. I was considered the class clown or goofy one among my friends, but deep down inside I was hurting.

I just wanted to be “normal” and in my eyes that was a life without psoriasis. I may have been this confident chick to somebody from the outside looking in, but I stopped myself from a lot due to my condition. Now that I look back on my teenage years everything I did was virtually shaped around my psoriasis. The decisions I made, the activities I participated in, the events I went to, even the clothes I wore.

2.  What’s it been like “going public” about your psoriasis on your blog?

I started my blog in June 2011 after going to the National Psoriasis Foundation (NPF) conference. I remember sitting in a workshop they had about using social media to advocate for your condition. I had seen other psoriasis bloggers, and I remember saying to myself, “I can do that.” On the way home from the conference, ideas were flowing to my mind on different posts I could do, and it was a really great feeling.

"When I started to really and truly love myself, accepting my psoriasis became a lot easier." - Alisha B.

Going public with my condition through my blog has been liberating! I wish I would have done this a long time ago. A lot of times I hid, uncertain of how people would accept my condition. But today, the more people I discuss my disease with, the more I realize that the things I was telling myself mentally were only because of my own insecurities. People are a lot more understanding than I could have ever imagined.

My outreach has also helped me to connect with other people dealing with psoriasis, and I no longer feel alone like I did just one year ago.

3.  What are the most helpful things you’ve learned from other psoriasis patients?

I met a young lady named Kasi at the NPF conference. Her psoriasis condition was equivalent to mine. Her skin was very visibly broken out. She was so confident with the way she walked and the clothes she wore, it really inspired me to stop hiding. Kasi as well as others at the conference really made me feel good and encouraged me. I’ve had this type of encouragement from family and friends, but nothing is like the inspiration that you receive from people who are actually living with this disease. Other psoriasis “conquerors” encourage me to not be ashamed and to embrace my condition.

4.  Tell us about the WEGO Health Activists Challenge and why you’re participating.

The WEGO Health Activists Challenge was suggested to me by the NPF. Doing the challenge is exciting because there are new topics to discuss everyday and I get to connect with other activists. I decided to participate in the challenge to bring more attention to psoriasis. A lot of people are silent about it out of fear of ridicule, and I was once one of these people. The more people who know about this disease, the faster the stigma will end.