The Value of Openness: The PatientsLikeMe Blog

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’ve featured people like User Experience Engineer Cris Necochea and Research Assistant Shivani Bhargava.  Today, we share our interview with Office Manager Alison Dutton, who’s been keeping things running smoothly – and hilariously – for the past two years.  Find out what we learned from Alison about life at the epicenter of a startup.

1.  What’s it like being the Office Manager of a growing startup?

I have heard this particular question many times before and each time I give a different answer – all depending, of course, on how the previous day has ended. It can be incredibly exhilarating and at the same time exhausting mentally as well as physically. The important thing to note is that it’s never, ever dull.

Although this can be said for most positions in a startup, for me, I relish the spontaneity and craziness that ensues on a daily basis. I have had experiences with established companies that had more of a corporate culture. It is Groundhog Day all over again. Since I have a few startups under my belt, I am familiar with the energy, which is so addictive.  Everyone should try it once in their lifetime.

2.  You have such a great sense of humor.  Is that a requirement in your position?

The humor isn’t just a prerequisite for the job but also for life in general. I grew up the only girl in a household of boys, so I probably had to develop a sense of humor and thick skin a little quicker than most. As far as it coming in handy for my job – things change quickly in a startup environment and specifically with a job like mine, where one day you’re preparing for a board meeting and the next day you’re planning a company field trip to the local pub. You must be able to roll with it and maintain a smile throughout.

I find that being able to laugh at life – and at myself – helps me make the most of every day, whether I’m having a good one or a bad one. It also helps others relax when things get tense. It’s helpful that I tend to see things in a more positive light. After reading some of the patient profiles on our site, it reminds me of how lucky I am. I can stub my toe 10 times during the day and at the same time realize that I am wickedly overdrawn on my bank account and still laugh at myself.

What it boils down to is appreciating what you have – I am so dang lucky to come to work every day and be with the most remarkable people I have ever known.

3.  Give us a slice of life at the office.  What’s a typical day like for you?

I can always try to schedule my day, but it never truly goes according to plan. Today started with a call from someone trying to find our offices – she was driving from Logan Airport and had no experience with Boston drivers. She did eventually make it, although a little beaten up.

The remainder of the day would probably go something like this…first, check in with our amazing 3-Star and PatientsLikeMeInMotion programs for members. While monitoring that, start in on another job, which may entail booking travel for 3-5 employees, setting up a new employee or managing a build out (we have expanded our offices a couple of times). All the while I am answering random but important questions from employees.

At the same time, I try to maintain incoming invoices, scan resumes, work with marketing on our t-shirts, manage employee expenses, bark at people who don’t clean up after themselves, pay our software licenses, mail tax documents, submit expense reports, cancel expense reports, run to the Apple store for supplies, order food for the tired and hungry and, in between it all, try to grab that first cup of coffee.

4.  What would you tell someone who’s considering working at PatientsLikeMe?

We do important work and require 110% every day. You must be on the ball and able to take little direction and run with it – in other words, if you need someone to dictate your every move, this is not the place for you. We work very hard and at times play very hard, but most importantly, we do it together.

Everyone here is on the same team and, believe it or not, there are no cliques.  People genuinely care about each other. I chalk this up to Team Heywood. Lastly, we have a fairly rigorous interview process, but if you make it through and join the company, you will never look back.

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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 Research Scientist, Senior User Experience Designer, Marketing Associate and more at the moment.

We kicked off MS Awareness Month by sharing some key facts we’ve learned from our MS community (26,000+ members and counting).  Now, we are digging a bit deeper in honor of MS Awareness Week.  You’ve already heard about common MS symptoms as well as frequent topics in our MS forum.  But what it is really like to live with MS – and how does MS impact not just those diagnosed with the disease, but all of us?

The National Multiple Sclerosis Society (NMSS) has put together a video showing all of the ways MS impacts individuals, families and society.  For example, did you know that MS costs the US economy $28 billion each year?   Or the average MS patient $69,000 per year?  Another startling fact is that the average person with MS leaves the workforce 10 years after diagnosis.  (Most are diagnosed in their 20s and 30s).  Check out the video above to discover more about how MS impacts you, even if you don’t know anyone with the condition.

As for an accurate picture of life with MS, the best descriptions come from those who know best – MS patients.  In a recent discussion in our MS forum, patients asked each other what one word they think best sums up life with this chronic, often disabling disease of the central nervous system.  What were their responses?  Here is a word cloud illustrating 30+ answers submitted by our community.

Putting words together in a full portrait, below is a poem by friendinflare, a three-star MS member who has lived with MS for 10 years.  Not only does she depict some of the issues MS patients face, but she also speaks to the relief that comes from sharing your experiences with others like you.  (At PatientsLikeMe, you can share treatment and symptom data, status updates, private messages, forum discussions and much more.)

In early November, I discovered a website.
A place where MS’rs can talk about our plight.
Our symptoms are as varied as our usernames.
There are threads for information, advice and even games.
We have legs of jello, vision that’s blurred,
And limbs that tremble from damaged nerves.
We still remain hopeful - but no one’s been cured.
“Daily injections will help” our doctors have reassured.
Our fatigue gets so bad we are glued to our beds,
We have cognitive issues from lesions in our heads.
Most don’t understand us, we’re a breed of our own.
We talk everyday without picking up a phone.
Our computers are a lifeline to hope,
Letting us talk with MS’rs from all over the globe.
Even though fights can break out at lightning speed,
Members always support those in need.
Here’s to everyone at PatientsLikeMe.

Getting a clearer picture of MS?  Good - but there’s even more to come.  Stay tuned for our two-part interview with an MS patient who authored a book called “The Dumbest Things Smart People Say to Folks with MS.”

Today is World Kidney Day, a joint initiative of the International Society of Nephrology (ISN) and the International Federation of Kidney Foundations (IFKF).

Since 2006, World Kidney Day has been raising awareness of the importance of our kidneys to our overall health.  For example, did you know that it’s our kidneys’ job to remove toxins and excess water from the body?  Or that these two organs – roughly the size of a fist each – help regulate our blood pressure, blood cell production and bone health?

It’s no wonder then that humans can’t survive without kidneys, which brings us to this year’s World Kidney Day theme:  the need for life-saving organ donations and kidney transplants.  Without them, those with chronic kidney disease who progress to complete kidney failure (aka end stage renal disease) have a bleak prognosis.  Unfortunately, the need for transplantation is growing worldwide due to the increasing prevalence of diabetes and high blood pressure, the main causes of kidney disease.

As a result, prevention is inextricably linked to being healthy in general:  maintaining a healthy weight, exercising and eating right.  Here in the US – where approximately 26 million Americans have chronic kidney disease, and millions more are at risk – the National Kidney Foundation has launched a campaign featuring legendary restaurateur B. Smith.  Check out the video below to learn about the risk factors for kidney disease and how you can reduce them with simple actions such as reducing salt and fat intake, quitting smoking and replacing soda with water.

Are you living with high blood pressure, diabetes or chronic kidney disease?  Connect with others like you to share experiences, support and advice.  At PatientsLikeMe, we have 2,700+ patients with hypertension, 2,700+ patients with type 2 diabetes and 300+ patients with chronic kidney disease.  In addition, 1,900+ members have undergone – or are awaiting – a kidney transplant, while 50+ others are on hemodialysis or peritoneal dialysis.  Add your own story and gain insight from this wealth of real-world knowledge.

Welcome to the sixth installment of our “Spotlighted Blogger” series.  So far, we’ve interviewed patient bloggers living with gastroparesis, type I diabetes, bipolar I disorder, Parkinson’s disease and ALS, and today we introduce Lissa, a PatientsLikeMe member who has lived with psoriasis for over a decade.  An early participant in our psoriasis forum room, Lissa appreciates the support of family and friends but has discovered an element of kinship through meeting other psoriasis patients.

Entitled Psoriasis Girl’s Point of View, Lissa’s new blog chronicles the ups and downs of recurring psoriasis outbreaks (which cover most of her body with itchy red plaques), working with a dermatologist and experimenting with different treatments and skin care regimens. Most recently, she explored UVB photo therapy and candidly showed the before and after photos of the initial results.  If you’re wondering how she finds perspective amidst these lifelong challenges, read on for inspiration.

1.  I see you first experienced psoriasis as a teenager.  How have things changed since you were first diagnosed?

You know how teens can be!  It was tough handling the criticism young people subject themselves and each other to.

My psoriasis became more of a permanent fixture on my body in my early-to-mid twenties, instead of coming and going as it usually did in my teens.  I suppose as the stress of being ‘part of the real world’ increased, so did my psoriasis outbreaks: working full-time in retail management and balancing going to school part-time, martial arts classes, and a relationship.  I eventually resigned from work in late 2010 to go back to college full-time and be a homemaker, with stress being an influential factor.  My stress level is fairly low these days, however the psoriasis remains uncontrollable.

My thinking about psoriasis has certainly changed.  When I was a teen, I didn’t really put any thought into the fact that this is something I will deal with my entire life.  I guess I just assumed it would be minor and come and go, not knowing that I would one day be 85% covered, with it affecting so many aspects of my life, including trying to treat psoriasis while trying to conceive!  It’s a struggle but I know I need to stay positive.

2.  Your blog conveys a great attitude. What is the most stressful aspect of having psoriasis, and what helps you to cope?

In my blog, I’m just being real, just being myself: someone who is learning to be positive.  I truly believe the mind is powerful, and while I wish I could just think my psoriasis away, I know that staying positive helps.

There are many frustrations to having psoriasis, and I’m sure they vary from person to person.  I get stressed about money and affording prescriptions and treatments, stressed about public interaction when it’s hard to hide my plaques.  But one thing that really gets me feeling like I’m spinning down a dark hole is when a medication or treatment seems to be working and it looks like I will finally get all the psoriasis to go away and then new plaques begin to crop up and quickly spread like wildfire.

I cope by talking to my husband and getting back rubs, trying to stay positive and keeping my mind focused on something else, like reading or cooking.  I also think it’s important to exercise to fight stress.  As far as providing comfort to psoriasis, a good lotion that’s geared towards itch-relief, is fragrance-free, and thick and creamy is the weapon of choice to slather on deliberately as often as necessary between topical Rx applications.  Other than that, gotta let “the attitude determine the altitude.”

3.  Great to see you updating your profile often. Which profile tools do you find most helpful, and why?

I like the charts.  I like having the ability to track my symptoms, my mood, my quality of life, and so forth to look for patterns and connections.  I find them all to be in-depth, and they ask good questions. I tried keeping a journal in the past to track my psoriasis, but this is better because it’s easier to read, all on one page, color-coded, and more detailed.  I also like the InstantMe tool.  It’s like a status update.

The community aspect is great.  Between the forums, personal messages, following people, commenting on other patients’ InstantMe [answers], and updating your own info, there’s a lot to do on the site. When I first signed up, I wasn’t expecting all the useful tools – I just thought it was a community.

4.  What have you learned from fellow PatientsLikeMe members? Anything that has surprised or inspired you?

I’ve learned that there are other people that have their good days and bad days, just like I do.  They worry about similar things that I do, so we can bounce things off one another, seek advice and solace in one another.  We’ve talked about treatments and medicines, lotions, make-up, and fashion, and how we relate these things to dealing with psoriasis.  I’ve been inspired by other patients to try to feel better, and to try to make others feel better too, help them stay positive.

It’s nice to know there’s a community of real people who truly understand how I feel.  My husband and friends and family are empathetic and there for me, but the other patients are people who really know what it’s like to feel the way I’ve felt.  I really feel like I can talk about anything to some of the friends I’ve made through PatientsLikeMe.

March is National MS Education and Awareness Month (NMEAM), an initiative of the Multiple Sclerosis Foundation (MSF) to raise awareness for this chronic neurological disease affecting the brain, spinal cord and optic nerves.

This year’s theme is “At Your Best with MS,” encouraging the more than 2.5 million people with MS worldwide to seek the best quality of life possible.  This means different things to different people as MS varies widely in severity, with approximately 15% of those diagnosed becoming severely disabled.  It could include adhering to a treatment regimen, eating healthy, keeping fit, developing a support network and/or maintaining good emotional health.

It could also refer to nurturing hobbies and interests.  That’s why the MSF has launched the “Show Us Your Best” contest, which calls for creative submissions (such as poems, essays, photo collages, videos, songs and more) demonstrating how people are raising awareness of MS.  The deadline for entry is March 31st, and the grand prize winner will win a cruise for two on MSF’s 2013 “Cruise for a Cause” to Alaska.

With 26,000+ members, the MS community at PatientsLikeMe is one of our largest.  Approximately 80% of the MS community is female (reflecting the fact that MS is at least 2-3 times more common in women than men), and slightly more than half have the relapsing-remitting form of the disease (RRMS).  We also have 1,400+ patients with primary progressive MS (PPMS), 2,200+ with secondary progressive MS (SPMS) and 580+ with progressive relapsing MS (PRMS).

Some of the most commonly reported MS symptoms in our community include bladder problems, brain fog, excessive daytime sleepiness and stiffness/spasticity.  What are our members taking for these issues – as well as for MS itself?  From disease-modifying treatments (DMTs) like Copaxone, Avonex and Tysabri to steroids like Prednisone to symptom-specific medications like Baclofen and Modafinil, our members have submitted hundreds of evaluations for nearly all available treatment options.  (Click on each drug name above to find out how they rate the effectiveness, side effects, cost and more.)

Our members are not only sharing their experiences with treatments and symptoms on their PatientsLikeMe profiles – they’re also chatting about them.  A lot.  To date, the MS forum room has over 786,000 posts! Some of the most frequently used forum tags are CCSVI (“The Liberation Procedure”), Low Dose Naltexone (LDN), SSDI (Disability Insurance), Fatigue, “LimboLand” and Research.  (Click on each category to see what patients are saying about the topic.)

Piqued by all the knowledge found in our MS community?  This is just the the tip of the iceberg – and the kickoff of our MS coverage this month.  Stay tuned for more about what our MS members are sharing and learning during MS Awareness Week (March 10-17th), organized by the National Multiple Sclerosis Society (NMSS).

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.

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

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.

• Anyone tried trigger point injections? (Neurological Room)
• Muscles reacting badly to exercise – help! (PatientsLikeMe Room)
• I may look normal, but I feel so alone (Mental Health Room)
• Treatment or no treatment – that’s the question (Epilepsy Room)
• Newly diagnosed and feeling overwhelmed (FM/CFS/ME Room)
• Any ideas for cognitive difficulties? (MS Room)

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

PUTTING THE “INSTANT” IN INSTANTME

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.

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”)

• Society for Participatory Medicine, its journal and its blog e-patients.net (the hub)
• Medical Self-Care (pioneering 1985 article by Dr. Tom Ferguson)
• e-Patients as Medical Researchers (key 2002 article by Dr. Tom Ferguson)
• e-Patients White Paper (see Ferguson’s Seven Preliminary Conclusions, Chapter 2)
• Patient Activation Measure (Dave’s article about developing patient engagement)

Other Resources for the Budding E-Patient

• Visible Body (a good start to understanding anatomy)
• Open Notes (a doctor-patient project funded by the Robert Wood Johnson Foundation)
• Peer-to-Peer Healthcare (insightful 2011 Pew Internet independent research report)
• CaringBridge (patient blogs to ease the communication burden during a health crisis)
• GlowCaps (prescription bottle caps that use light/sound to help remind you)

(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.

(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.

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.

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

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.

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.

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

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.

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.

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.

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?

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

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.

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.

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.

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.

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.