13 posts from August, 2012

Scenes from the PatientsLikeMe Company Picnic

Posted August 30th, 2012 by

Every summer, PatientsLikeMe pulls out the Nerf guns and throws a company picnic for our employees and their families.  This year, the fun took place at Boston’s Museum of Science so that we could enjoy both the museum’s exhibits as well as its prime location on the Charles River.

With the Boston skyline twinkling over our shoulders, the team noshed on hamburgers and hot dogs while getting glitter tattoos, playing bocce ball and engaging in our annual Nerf gun war.  Below are a few shots of the afternoon taken by our resident shutterbug and Head of Product, Jeremy Gilbert, who captured the lighthearted feel of the event.  It’s hard to believe summer is almost over, but at least we got in one last gasp.

A big thanks to our amazing Office Manager, Alison Dutton, for pulling together another fantastic gathering!

Scenes from the 2012 PatientsLikeMe Company Picnic

Clockwise from Top Left: Jamie Heywood Aiming His Nerf Gun;  Shivani Bhargava, Marni Coons, Tim Vaughan and His Wife Brigid, Courtney Cydylo and David Blaser Spelling Out the Hashtag #YOLO (You Only Live Once) Inside the Museum; Jeanette DeVita and Her Son Isaac; Ben Heywood Showing Off His New England Patriots Glitter Tattoo.


The Joy of Being Helpful

Posted August 27th, 2012 by

Many patients with life-changing conditions report feelings of grief and guilt about no longer being able to do many of the things they did in the past.  As a recent discussion in our forum revealed, however, patients are finding ways to reset their perspective and boost their self-esteem by focusing on what they are still able to give to others, despite the challenges of their illness.

The Joy of Being Helpful

Here are some of the small and large contributions our members have made, helping them to feel good about themselves:

  • Going to the hospice to sit and talk with the residents
  • Sending handwritten letters via snail mail to loved ones
  • Participating in educational events about the role of service dogs
  • Getting good friends together for a gathering to reconnect
  • Volunteering in a food bank to appreciate having food to eat
  • Calling an isolated grandparent or friend regularly on the phone
  • Allowing the cat from down the road to come inside and snuggle
  • Fostering or adopting medically fragile children in the system

Have you found strength – or a renewed sense of purpose – by doing what you can to help others?  Share your experiences in the comments section.  Also, you may want to check out two books recommended by our members for inspiration:  Strong at the Broken Places, about five different patients with chronic illnesses including ALS and Crohn’s disease, and 29 Gifts, written by a multiple sclerosis (MS) patient whose South African healer gave her a prescription of helping others for an entire month.


PatientsLikeMe Exhibits at the American Academy of Dermatology Summer Meeting

Posted August 24th, 2012 by

The American Academy of Dermatology Summer Academy Meeting Took Place Last Week in Boston - and PatientsLikeMe Was There!

As you know from our recent blog post, August is Psoriasis Awareness Month, and the psoriasis community at PatientsLikeMe has nearly 2,000 members. It’s only fitting that PatientsLikeMe spent last week connecting with others focused on skin health at the American Academy of Dermatology (AAD) Summer Academy Meeting, an annual educational event for dermatology-focused medical professionals. Held at the Hynes Convention Center here in Boston from August 15-19th, the conference hosted over 1,350 healthcare providers and featured more than 140 exhibitors, including PatientsLikeMe.

If you happened to be at the event and ventured by our booth, you would have seen the friendly faces of PatientsLikeMe employees Sally Okun, Lori Scanlon, Chris Fidyk, Marcy Fitz-Randolph and Sebastiaan Foppema, who spent time chatting with dermatologists and giving them information about the 5,000+ patients with a range of skin conditions at PatientsLikeMe. The team received a lot of positive feedback from providers about the site, as well as specific features such as our Doctor Visit Sheet. Sally, who oversees heath data integrity at PatientsLikeMe, even added a new condition, confluent and reticulated papillomatosis (CARP), to the PatientsLikeMe system in real time after speaking with a provider who specializes in that condition..

A Glimpse of the PatientsLikeMe Booth Before the Attendees Arrived

In the near future, we’ll be revealing results from a new patient survey aimed at uncovering the emotional and physical effects of psoriasis, a chronic autoimmune condition. Keep your eyes out for an in-depth post with those results!

PatientsLikeMe member ccydylo


$70,000 at Stake in the “Reporting Safety Events Challenge”

Posted August 22nd, 2012 by

How serious is the U.S. Department of Health and Human Services’ Office of the National Coordinator for Health Information Technology (ONC) about increasing patient safety?   So serious that they are running a contest challenging the best and brightest developers to create a platform that makes it easier to report a patient safety event electronically.

Learn More About the "Reporting Safety Events Challenge" for Developers Here

The Reporting Patient Safety Events Challenge is offering $70,000 worth of prizes, with $50,000 (and a demo opportunity) awarded to the first place winner, $15,000 to the second place winner and $5,000 to third place winner.  The submission deadline is August 31, 2012.  Learn more about the contest guidelines and 30+ participating developer teams here.

“Ideally, we would live in a world of optimal care delivery,” says the ONC.  “Physicians, nurses and care delivery organizations across the country are continuously working to minimize and eliminate errors.  But, until this ideal world exists, we need to invest in infrastructure that helps enable better care quality, risk management and shared learning – all to ensure better care for patients.”

PatientsLikeMe fully supports this goal, which is why we introduced our first-of-its-kind adverse event reporting platform in 2009.  As part of a two-year pilot program, our members with multiple sclerosis (MS) were able to submit adverse events related to a medication, medical product or medical device directly to the U.S. Food and Drug Administration’s MedWatch program through PatientsLikeMe.  Our system automatically pulled relevant data from the patient’s profile into a FDA 3500 form, dramatically reducing completion time.

Since then, we’ve also developed an integrated and comprehensive drug safety reporting platform that monitors patient data for potential adverse events when we are collaborating with a sponsoring partner in designated disease areas. These data are then clinically triaged and curated using the Medical Dictionary for Regulatory Activities (MedDRA), an industry standard terminology. Adverse events are submitted to our partners electronically in FDA 3500A format to meet regulatory timelines and reporting criteria.  Of note, PatientsLikeMe is the only online health data platform in social media that has successfully passed multiple drug safety audits conducted by our partners’ pharmacovigilance and drug safety experts.

What’s the difference between patient safety and drug safety?  And what do we see ahead in this critical area of healthcare?  Tune in to a podcast with PatientsLikeMe Chairman and Co-Founder Jamie Heywood on this very topic.


Bringing PatientsLikeMe into the Doctor’s Office: An Interview with Pediatrician Dr. Jim King

Posted August 20th, 2012 by

You may recall that in July we shared a video about Doctors 2.0 and You, a conference focused on how physicians are using web 2.0 technology.  Today we’d like to present a real-life example of this concept: Dr. Jim King, MSc, MD, FRCPC.  A pediatrician at the Children’s Hospital of Eastern Ontario (CHEO) in Ottawa, Dr. King runs a number of different clinics for rare diseases.  He also serves as the hospital’s Medical Director for Informatics.  Find out how he has used PatientsLikeMe as part of his practice and much more in our interview below.

Dr. Jim King, MSc, MD, FRCPC, Medical Director for Informatics and Pediatrician at the Children's Hospital of Eastern Ontario (CHEO)

1. How did PatientsLikeMe come to your attention?

We were doing a presentation a number of years ago, in 2006 I guess. We were talking about a number of things, but more specifically the use of mobile technology in healthcare and research as well as personal health records. So we were sort of working up some information and then we came across PatientsLikeMe. We were basically looking at some of the business models around personal health records, specifically around Microsoft Vault and Google Health and those things, and we thought PatientsLikeMe had a little bit of a different spin.

2. As a pediatrician, how have you used PatientsLikeMe?

I specifically used it in one of my clinics. I follow a number of teenagers that have orthostatic intolerance and also chronic fatigue and fibromyalgia and other conditions related to orthostatic intolerance. I get a lot of questions about different medications. The families are very well versed in information and are always looking for new sites to visit. So I will often direct them to PatientsLikeMe. You can find sites with support groups, but you never really know how many people are involved. Then people are going online and looking up things by themselves. But I felt that all the information being presented back through PatientsLikeMe was pretty good.

One example was a 16-year-old patient with fibromyalgia. Their family doctor had recommended she take gabapentin based on a news article. So in the past, and even currently, one of the ways I would look at this situation and get as much information as possible would be to go on sites like PubMed or Bandolier, the Oxford site in the UK, and try to pull together what worked and what didn’t work. Some of these sites are pretty good because often they will tell you what the positive outcome is. But one of the difficulties is that they don’t always tell you what the adverse affects are.

Side Effects Reported by PatientsLikeMe Member for the Medication Gabapentin

It was nice because I sat down with this patient and we pulled up PatientsLikeMe. And I think at that time there were a couple hundred patients that had been on gabapentin and the actual number that had side affects, I’m just recalling now from a few years ago, was equivalent or slightly greater than the amount who had actually benefited from the medication. So we made a decision at that time not to actually go on gabapentin. Instead, we tried some other things. It was very helpful in my daily stream of care to be able to do that.

3.  We have a large community of fibromyalgia and chronic fatigue syndrome (CFS) patients at PatientsLikeMe. What are some of the challenges for adolescents with these conditions?

There are multiple challenges. I think the first challenge is that it’s really an undefined condition. There isn’t a specific diagnostic test, so labeling is a bit of a challenge. Sometimes it takes time for people to understand the impact. And, it’s the same as any chronic illness that doesn’t have overt physical symptoms. You know, everyone looks normal but they feel terrible. When you’re feeling bad all the time physically, or a lot of the time physically, that can make you feel unwell mentally. So having a place where you can go to actually hear that and learn how other people are coping and dealing with it is a big benefit. It certainly shouldn’t hurt, right? And there can be some pretty positive effects from having a community as well.

We are making a diagnosis based on a constellation of symptoms so there are probably a lot of different disorders or a lot of different reasons why someone has a diagnosis of chronic fatigue. So because it’s such a heterogeneous group, there are going to be a lot of different management and therapeutic approaches. So, you really need a large number of people to start understanding what’s working and what’s not working. And again, compiling and pulling that information together is quite beneficial.

4.  Do you have any thoughts on how large online data sets at PatientsLikeMe or other websites could shape the future of healthcare?

You can’t manage what you can’t measure, right? That’s quite obvious. So, if we can do better measurements along knowing what your population is, but have something on what the actual outcomes are, that should be beneficial in the long run. It’s like anything. You have to know your population really well. And if you can define your population really well, then these large data sets, and I would say sites like PatientsLikeMe, can be quite powerful. It is a definite movement and force going forward, for sure. You need thoughtful stewardship for this, and you need a thoughtful ability to analyze the data and make clinical sense from it.

5.  Anything else you want to add about PatientsLikeMe?

For me, there are two other things.  First, the actual connections for people from sites like this are quite important – you know, the support group piece. And also you will have people with multiple problems and they may be doing something that seems to be a bit unique but is beneficial. Also, say you have a condition which is rare and there are only a couple of hundred cases in the world. You learn so much more when you start connecting and you find that maybe a problem, like fever, is a normal part of the illness and people just haven’t gotten together to figure it out. Being able to share that information relieves a lot of stress for families – we hate the unknown – and is quite powerful.

Second is the explosion in clinical information, especially the way things are going with genetics, molecular biology and bioinformatics. The ability to be diagnosed or know your risk and response to treatment with one or multiple diseases based on your genetic material is fantastic.  While there is tremendous potential, this is extremely complex and what we are going to see is that our phenotypes, our observable characteristics or traits, may or may not match our genotypes, the inherited instructions within our genetic code. I think sites that can link large groups are going to become more powerful.

So, as we are pulling all those things together, it will be important to have a source where you can actually be able to make sense of it and make it a lot easier to get some prognosis for guidance for people about what’s going to happen. Because a lot of times, you’re sort of in the dark with a lot of uncertainty for some conditions. So I think pulling that information together can be quite powerful and liberating.


Redesigning Healthcare: Guest Post by Kirt Hine

Posted August 17th, 2012 by

Today’s guest post is written by Kirt Hine, who was a research intern at PatientsLikeMe in June and July.  On his last day, Kirt gave a presentation to the entire company about his experience at the 2012 Healthcare Experience Design Conference, held in Boston last March.  It made such an impression that we asked him to share his takeaways on the blog.

Healthcare Experience Design Conference (HxD) 2012

The Healthcare Experience Design Conference, known in short as “HxD,” is somewhat of an anomaly.  It deviates from traditional healthcare conferences in that you have seasoned healthcare professionals sitting alongside academics, graphic designers, product experts, marketing agents, and entrepreneurs.  You know that feeling you get when you find something that you didn’t even know was missing?  That’s the way I felt attending HxD 2012.  It’s a true melting pot of professionals, and it hits an innovative sweet spot in the ever changing world of healthcare.

Preventative health, open data, electronic medical records and mobile health were just a few of the themes buzzing around HxD 2012.  But for me, the overall theme of the conference was the inherent trend of consumer-centered health.  We are witnessing a paradigm shift in healthcare – one in which patients are becoming customers.  With technological innovations and proper user interfaces, these customers are taking their health into their own hands.

Out of over two dozen speakers, there were a handful that stood out. Joseph Flaherty, senior manager of Agamatrix, gave an intriguing presentation about improving healthcare outcomes. Joseph is a seasoned hardware developer, and his presence was a great example of HxD’s professional diversity. Todd Park, CTO of the US Department of Health and Human Services (HSS), gave a keynote address titled Unleashing the Power of Open Data and Innovation to Improve Health. It was honestly groundbreaking. This tweet by conference speaker John Yesko sums it up pretty well:  “@todd_park is killing it at the HxD conference.  Future of government?”

Speaking of John Yesko, he is the user experience director at Walgreens. His talk, based on his experience and achievements in the retail pharmacy setting, was a wise take on the fundamental principles of consumer self service in healthcare.  On the mobile health front, speaker Josh Clark debunked mobile design myths. “There’s no such thing as mobile web,” he said while talking about how to make health apps more universal for users. Devorah Klein, a Boston-based designer, echoed these thoughts and said that this is especially true when designing for behavior change – an increasingly common goal in healthcare.

Athena Health President, CEO and Co-Founder Jonathan Bush Speaking at HxD 2012

Athena Health President, CEO and Co-Founder Jonathan Bush, seen on the right in the image above, gave an entertaining reality check during his closing keynote interview.  I remember thinking to myself that the primary problem in healthcare is determining what our healthcare problems truly are.  With modern technology though, society is getting closer to solving those problems.  Fittingly, HxD’s mission statement reads: “We have the power to positively affect human lives through improved design technology in the healthcare arena.  We’re bringing together the best and brightest to explore the toughest challenges and present new solutions.”  And from my point of view, the conference succeeded at that.

It is impossible to properly acknowledge all of the noteworthy speakers and topics in this post.  But thanks to modern technology and sponsors, much of the conference is available for free on the web. HxD’s site offers a fun, interactive and illustrated “walk through” of the 2012 conference that includes slide decks, videos and abstracts of the speakers I mentioned above.  Additionally, HxD’s video page lists all of the speakers alongside videos of their talks.

If any of this sparks your interest, I encourage you to attend HxD next year.  The dates are March 24-26, 2013. Mark your calendars, and maybe we’ll see you there.


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?


Today’s Photo: Shake, Rattle and Roll

Posted August 10th, 2012 by

The heat isn’t letting up this summer – but that isn’t stopping our members from participating in disease-related walk/run events in their local communities.

For inspiration, please meet some of the members of Parkinson’s disease patient daddytom’s team, who joined together to raise money and show solidarity at a Shake, Rattle and Roll Run sponsored by the American Parkinson Disease Association in Texas.  From left to right are Connie, Paula, Dorothy and Larry (the latter wearing blue PatientsLikeMeInMotion t-shirts) as they triumphantly cross the finish line.

Daddytom's Team at the Shake, Rattle and Roll Run

Congrats to daddytom and all of our PatientsLikeMeInMotion-sponsored teams for your efforts to raise funds and awareness for your condition. We’re honored to support you every step of the way.  For more PatientsLikeMeInMotion team photos, check out our growing Flickr collection.

Thinking about organizing a team for this fall?  Learn more about the PatientsLikeMeInMotion program today.


What Part of MS Are You Most Afraid of?

Posted August 8th, 2012 by

Can facing your fears help you come to terms with them?

That’s the idea behind a recent discussion in our multiple sclerosis (MS) forum, in which one member asked, “What part of MS are you most afraid of?”  The answers poured in from dozens of MS members who found it cathartic to reveal their true fears.  In some cases, these heavy concerns are things that members have not felt comfortable sharing with family or friends.  For example, some stated that they are most scared of “relying on others” or “becoming a burden.”  For others, it’s “not recognizing myself” or “having no quality of life.”

Check out some of the other answers in the word cloud below.

A Word Cloud of One-Word Answers to "What Part of MS Are You Most Afraid of?"

Are there fears about your illness that you haven’t shared?   Find solace and solidarity by talking to other patients like you today.  You may find that bringing your fears out into the light makes them seem smaller.  Or you may learn that many others are dealing with the exact same worries.  Discover the benefits of “letting it out in the open” amongst a supportive community who can truly relate.


Patients as Partners in Personalized Medicine

Posted August 6th, 2012 by

“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.


A Day in the Life of PatientsLikeMe Community Manager Jeanette DeVita

Posted August 3rd, 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 employees from different departments.  So far, we’ve interviewed User Experience Engineer Cris NecocheaResearch Assistant Shivani Bhargava, Office Manager Alison Dutton, Research Scientist Timothy Vaughan, Biz Dev’er Arianne Graham and Product Manager Maureen Oakes.  Today we’d like to introduce you to Jeanette DeVita, who came on board as a Community Manager in February 2011.

PatientsLikeMe Community Manager Jeanette DeVita

1.  What were your first impressions upon joining PatientsLikeMe?

I was very excited to see the job listing for a Community Manager at PatientsLikeMe. I have a background in nonprofits, and I was looking to shift to the for-profit sector. I was thrilled to find a job at a company that was for-profit but with the heart of a nonprofit.

It was clear that the employees at PatientsLikeMe wanted to make a difference in the lives of patients and that was something I wanted to do too. It’s important to me to feel like my work makes the world a better place and working at PatientsLikeMe gives me that feeling.

I was also impressed and excited by the company culture at PatientsLikeMe.  Every Friday there’s a lunchtime presentation and everyone eats together; there are no cubicles, there’s interesting artwork on the walls; teams take meetings sitting on couches together and blow off steam by playing Guitar Hero and ping pong.

2.  Tell us what’s involved in being a PatientsLikeMe Community Manager.

Every day I start by reading my messages from patients who have contacted me on the site. I work on a team of Community Managers with Emma Willey and Liz Morgan, so if I need feedback before working through an issue, I talk to the rest of my team. Then I move on to the forum. I read the new conversations in the communities I moderate, and I tag threads [with a topic category] as I read them so that they are easier for patients to find. I also check out the rest of the site, answer questions about how to find information and try to help patients connect with one another and get their questions answered.

Being a Community Manager is a role that involves wearing a lot of hats. On the site I’m a hostess, a source of information, tech support, librarian, conflict manager and a listening ear. On the larger PatientsLikeMe team, I represent the voice of the patient, and I relay what I learn from patients back to my colleagues.

3.  Congratulations on becoming a mom! Did you manage your health online during your pregnancy? Have you kept up with that since your son was born?

Thanks so much! I started monitoring my health online as I prepared to get pregnant, and I did it through my entire pregnancy. I began with monitoring my temperature and then I kept track of my exercise, my weight, my size and, of course, I kept a close eye on the calendar. Since I suddenly had so many appointments to keep track of, I found myself more reliant than ever on my calendar.

I saw a strong correlation in how I felt with how much walking I did and how much water I drank. By monitoring those two pieces of data I was able to quickly learn that I felt great when I drank 64+ ounces of water a day and walked to and from work.  I felt not so great when I didn’t.

After my son was born, I was glad I had already adjusted to keeping detailed records about myself and my health.  Now I monitor his feedings, sleep and other baby business using an app recommended to me by a friend. It makes it much easier to remember when he last ate when my husband and I both have an app that tells us.  I also continue to keep up with my exercise online and how many steps I take each day. I find it motivating, and I’m hooked on personal data now.

4.  What kind of comments from PatientsLikeMe members really make your day?

I love hearing that a patient’s life has been changed because of PatientsLikeMe. For example, when a patient connects with others like them for the first time; when they find real feedback and experiences from other patients who have already tried a treatment they are considering; or when learn about home modifications or life-changing tools from other patients, I go home feeling great about the work I do. Life can be very lonely, and life with a serious medical condition can be even more isolating. Making that burden a little easier for our users to bear is a great reason to come to work in the morning.

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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 an Analytics Strategist, Marketing Analyst and more at the moment.


Psoriasis Isn’t Contagious…But Awareness Is

Posted August 1st, 2012 by

Did you know that psoriasis cannot be transmitted through skin-to-skin contact – or any other type of interaction?

Psoriasis Awareness Month Is Sponsored by the National Psoriasis Foundation

August is Psoriasis Awareness Month, an annual event dedicated to highlighting the life-altering impact of psoriasis and dispelling the many myths surrounding it.  Beyond the misperception that it may be contagious, another major misunderstanding is that psoriasis is “just a skin condition.”  In fact, up 30% of people with this serious autoimmune disease will develop psoriatic arthritis, which can cause chronic pain and swelling in the joints.

Throughout 2012, PatientsLikeMe has been interviewing members who are blogging about life with psoriasis in order to shed light on this highly visible and often stigmatized disease, which affects as many as 7.5 million Americans and is the most common autoimmune condition in the US.  How have they managed both the physical and emotional challenges?  Check out our inspiring 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”

These four brave ladies are just the tip of the iceberg, however.  1,820 patients are sharing their experiences with psoriasis at PatientsLikeMe, while 730 patients are sharing about their psoriatic arthritis as well.  Get to know our growing psoriasis community and stay tuned for more psoriasis coverage – including the results of our new psoriasis patient survey and a recap of our exhibition at the American Academy of Dermatology Summer Meeting.