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?

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.

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?

“It’s only when you really get into the experience of being a patient with a life-changing illness, where you’re dealing with the uncertainty and the process, that you start to learn things.  You start to learn that the experience you’re going through – the pain you’re suffering, or maybe a side effect or something that worked – will never benefit anyone else because no one’s writing it down.” – Jamie Heywood

Recently we’ve shared two great interviews conducted by our partner Patient Power:  one with psoriasis patient Lissa and another with multiple sclerosis (MS) patient Marcia.

Today we’d like to share another interview conducted by the always thoughtful Andrew Schorr of Patient Power.  This one features PatientsLikeMe Co-Founder and Chairman Jamie Heywood, and it delves into some very interesting questions about the concept of personalized medicine.  Why are patients willing to share their data?  Can the Internet expedite clinical discovery?  What can patients contribute if they are considered full partners in the health care system?  Find out that and more in this insightful discussion.

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.

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.

FOR IMMEDIATE RELEASE

Nonprofit and “Not Just for Profit” Announce Collaboration at PartneringForCures Event

NEW YORK, NY – November 7, 2011 - Today, PatientsLikeMe and R.A.R.E Project, a nonprofit advocacy and support group for patients with all rare diseases, announce a new partnership to find and connect 1 million rare disease patients to share and learn everything possible about their conditions.  The organizations, co-presenting at the PartneringForCures event today in New York, are launching an international rare disease awareness campaign in 2012.

“There are 35 million patients in the U.S. with 7,000+ rare diseases and we want to find them, connect them and support them in sharing and learning by their specific disease and across all rare diseases,” says Dean Suhr, Chief Innovation and Community Development Officer at R.A.R.E.  “We’re excited to work with PatientsLikeMe because their open patient registry allows patients to contribute to research, while getting immediate benefits, like improved quality of life, from sharing this information with others.”

The goal of this collaboration between R.A.R.E and PatientsLikeMe, an online health community that started in 2005 for rare disease patients and is now open to everyone, is to allow for better shared learning and acceleration of discovery by rapidly connecting patients to researchers, companies, nonprofits and patients like them. The partners will combine resources to provide patients with the opportunity to make online and local in-person connections, engage nonprofits and local specialists, and contribute their health data to the open patient registry at PatientsLikeMe. Unlike other registries, PatientsLikeMe allows patients to query the data to compare their medical data to others with similar diseases, symptoms, or therapies so they can also compare their data across other diseases.

“The key to accelerating research for any patients, although particularly powerful for those with rare conditions, is to have efficient access to well characterized patient populations willing to be part of research,” adds Jamie Heywood, Co-founder and Chairman of PatientsLikeMe. “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. We will change that.”

For more about the R.A.R.E Project, including current awareness campaigns, go to: http://rareproject.org.  For patients and nonprofits that want to join PatientsLikeMe, go to http://www.patientslikeme.com.

ABOUT R.A.R.E PROJECT

The R.A.R.E. Project exists to raise rare disease awareness, unify and empower a vibrant global rare disease community, and fund innovations to support ‘in-their-lifetime’ rare disease research.

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 www.twitter.com/PatientsLikeMe and http://blog.patientslikeme.com]

On Tuesday, we recognized Mental Illness Awareness Week (October 2-8) by sharing some of our mental health members’ vivid descriptions of what depression feels like. Today, we’ve taken a look at what else our members are sharing – or not sharing – about more than a dozen mental health conditions at PatientsLikeMe.

On the site, more than 80% of our active mental health members (meaning, those who have logged in during the last 60 days, n=1,589) are capturing the various factors affecting their mood and sharing those experiences with patients like them. 1,339 have posted an InstantMe update (shown above) to record their moment-to-moment status, and 843 have completed a weekly Mood Map survey.

But what about sharing in the real world – outside of PatientsLikeMe? In a poll we conducted earlier this year, we discovered that patients with a mental health condition are, along with HIV patients, the least likely to share their diagnosis with others. For instance, overall results suggest that when it comes to immediate family, 81% of respondents say “all of them” know about the diagnosis.  However, in HIV, this figure is only 50%, and in mental health conditions, it’s 56%.

Interestingly, however, our poll also found that PatientsLikeMe members have shared their diagnosis with more people as a result of using the website. For mental health conditions (formerly called mood conditions at PatientsLikeMe), 28% of respondents said they had told more people about their condition as a result of PatientsLikeMe, as the graphic above illustrates. Here’s how one mental health member explains it:

“Although I have not created a large number of [forum] posts on PatientsLikeMe, just the few posts that I created gave me confidence in explaining my condition and how it has impacted my life.  PatientsLikeMe allowed me to explore others’ perceptions of their experiences. Knowing I ‘belonged’ here, and was understood here was valuable in my recovery.  So being comfortable here, at PatientsLikeMe, made me feel more comfortable discussing my diagnosis away from PatientsLikeMe.”

This, of course, speaks to the stigma surrounding mental illness, which is something Mental Illness Awareness Week aims to change. (The 2011 theme is “Changing Attitudes, Changing Lives.”) At PatientsLikeMe, we think change comes from getting to know real patients living with real mental health conditions. As one person commented on our Facebook page, “I always see people making fun of ‘crazy’ people, frivolous jokes including depression and bipolar, and movies that skew the severity, understanding and seriousness of these disorders.”

Can sharing your mental health experiences help erase the stigmas and stereotypes? The Academy Award-winning actress Glenn Close, whose sister has bipolar disorder, certainly believes so, as she writes in a great article entitled “The Stigma of Silence.” She argues that talking openly about mental illness with “more candor, more unashamed conversation” can “deconstruct and eliminate stigma.” We believe so too, but we’d love to hear your thoughts in the comments section.

“I got this call from my brother Stephen, and he said the news doesn’t look good. At that point, he’d been through enough processes to know what that meant – he had ALS. So I began this journey with my brother and my family…. We were thinking there had to be a way to make this about the patient. But it started like everyone else. You get that phone call, and your life changes.” – Jamie Heywood, Co-Founder

Recently, we launched a new and improved About Us page that included a short video about our company history. Now, we’re pleased to unveil a longer, more in-depth video that allows you to hear our founding story from four PatientsLikeMe executives and learn what drew each of them to become a part of our groundbreaking concept.

Tune in below to hear where it all started and why, five years later, we’re committed to continuing the journey we’re all on – as a company, as patients and as family members of those affected by disease.

You can also watch this insightful piece (~15 minutes) in three smaller segments:  Chapter 1, Chapter 2 and Chapter 3.