12 posts tagged “the”

A day in the life of Software Engineer Jacinda Zhong

Posted March 6th, 2015 by

In the last “A day in the life” post, Jonathan shared his story about his son Nolan’s hand injury. In case you aren’t familiar with the series, here’s the scoop. At PatientsLikeMe, we believe in the power of openness, and members frequently share about their health journeys and experiences with different conditions. And since they go above and beyond, the staff at PatientsLikeMe likes to share their own stories to help everyone get to know us, too.

In this edition, Jacinda, a software engineer on the PatientsLikeMe team, introduced herself and spoke about her role, her thoughts on health tech and her passions outside of work. Read her interview below, and don’t forget to check out other posts in the “A day in the life” series.

When did you first hear about PatientsLikeMe? What drew you to join the organization?

I heard about PatientsLikeMe through the Vice President of Engineering, Marcia Nizzari. She is a board member at the arts nonprofit Cantata Singers, which is where I used to work. After I heard about PatientsLikeMe and did some research, I was really drawn to the idea of an application that helps people, instead of technology for technology’s sake. I was also very moved by the founders’ story, and believe that if the leadership has a strong personal connection to the mission, the company becomes more mission-driven, versus financially-driven, which is unfortunately the case with so many technology companies.

Tell us a little about your role as a software engineer. What are some things you’re working on?

I have been working on many different parts of the website, such as quick start and the condition reports. I’ve really enjoyed being able to work in all levels of the stack – from database queries to JavaScript on the client side. I think that is something really great about the PatientsLikeMe engineering team, where the majority of the engineers work on the front and back end. This allows engineers to develop a wide skill set and to contribute to all parts of the site.

You’re one of PatientsLikeMe’s newest employees – in your first few months, what has really stood out to you about PatientsLikeMe?

Similar to what I said above, I really like that PatientsLikeMe is so mission-driven, and wants to change medicine. We are empowering the masses to communicate to each other, and come to conclusions that would not otherwise be reached in the traditional healthcare system. Technology has enabled us to create a platform to facilitate discussion and data-sharing that provides value where the market/patients do not realize they wanted it. It’s almost like we are Apple in some ways, where we are providing a service that the market didn’t know it needed, and only after we show the market what we have to offer, does it realize that it is desired.

We hear you speak French – c’est génial! What else do you do for fun outside of the office?

I am mostly coding in the evenings, but I also salsa dance, and do spin in the winter, and run in the summer. I did competitive ballroom dancing in college, which opened up my world to partner dancing. I started learning salsa in senior year of college, and continued after graduation. Next up is learning some more swing/lindy hop and west coast swing (though as you might have guessed, California is better for west coast swing than in New England).

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PatientsLikeMe members to be highlighted in patient empowerment webinar

Posted January 13th, 2015 by

Many PatientsLikeMe members talk openly about the reasons why they donate their health data and why they believe patient-centered healthcare means better healthcare for all. And just a week from now, two of them will be sharing their stories with everyone in a live webinar.

On Tuesday, January 20th, at 2:00pm EST, the Partnership to Improve Patient Care (PIPC) is hosting their first “Patient Empowerment Webinar,” an online event focusing on the importance of patient engagement in their own healthcare and in health policy. Two PatientsLikeMe members, Ms. Laura Roix and Ms. Letitia Brown-James, will be participating in the discussion, and their experiences will be a part of the webinar. Here’s a little bit about Laura and Letitia, and more ways they’re already empowering others:

Laura is a member of the idiopathic pulmonary fibrosis (IPF) community on PatientsLikeMe, and she recently traveled to Maryland to speak at the Food and Drug Administration’s (FDA) Patient-Focused Drug Development Public Meeting on IPF.  Laura went with our very own Sally Okun RN, VP of Advocacy, Policy and Patient Safety and spoke about her journey and what it’s like to live with IPF. (She recapped her experiences in an October blog interview.) But that’s not all Laura shares – she’s a 3-star member on PatientsLikeMe, which means she is a super health data donor and always keeps her information up to date so others can learn from her.

Letitia has been living with epilepsy since she was little, but after connecting with the PatientsLikeMe epilepsy community she learned about new treatment options available to her, like surgery. She shared about her experiences in a video, and after receiving her surgery, she’s been living seizure-free for years. Letitia is also a part of the first-ever PatientsLikeMe Team of Advisors, a patient-only panel that gives feedback on research initiatives and creates new standards to help all researchers understand how to better engage patients.

The PIPC webinar is open to everyone, so if you’d like to join, please RSVP to the event coordinator via email. Hope to see you there!

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The Patient Voice- MS member Jackie shares her story

Posted January 12th, 2015 by

 

When Jackie was diagnosed with multiple sclerosis after a long, exhausting process, she struggled with a fear of the unknown and had no idea what she would be facing. But then she connected with the thousands of MS members on PatientsLikeMe. Jackie shared with the community about how she felt her current medication was making matters worse instead of better, and others responded with how they had the same experience. They told her about a new medication that seemed to be working for some of them. Jackie’s doctor prescribed it after she mentioned what others had shared, and she’s been having good luck with it ever since. Watch the video to see more of her journey.

 

 

Share this post on Twitter and help spread #dataforgood. And don’t forget to check out previous #dataforgood member videos.


Open funding for open science to accelerate ALS research: An interview with Prize4Life CEO Shay Rishoni

Posted January 6th, 2015 by

Just about a year ago, we teamed up with Sage Bionetworks and TED Fellow Dr. Max Little for an ongoing Parkinson’s disease (PD) project called the Patient Voice Analysis (PVA).

 

The big idea: combine data from two sources – phone-based voice recordings and patient reported data from PatientsLikeMe’s Parkinson’s Disease Rating Scale (PDRS). Then, make the de-identified data sets available to the broader research community on Sage Bionetworks’ cloud-based computational research platform (http://www.synapse.org) to develop new tools to track PD disease progression.

We were overwhelmed by the response from the PatientsLikeMe PD community. More than 650 members provided 851 voice samples, and 779 of those were matched to the PDRS symptom data entered.

 

What’s next for open science?

Sage Bionetworks is working with the distributed DREAM community and ALS non-profit Prize4Life on another open science challenge alongside called the ALS Stratification DREAM Challenge. How does it all fit together?

The “Fund the Prize” campaign is the first of its kind effort to make the path for accelerating drug development completely open – the patient data is open access, the research is open, global and collaborative, and the funding is crowd-based.

The ALS Stratification Challenge, opening in Spring 2015, will be a worldwide cloud-based competition designed to spur the development of quantitative solutions that can identify which ALS patients’ disease will progress rapidly and which will progress more slowly. Prize4Life provides the largest ALS clinical trials database in the world. Sage Bionetworks and DREAM have created a synergistic competition concept and cloud-based computing platform that includes forums, webinars and a “leaderboard” that shows whose model is working best.

The individual or team with the best solution wins the prize – a $37,000 donation that the Challenge is asking everyone to help raise through the INDIEGOGO “Fund The Prize” campaign. The prize will help incentivize innovators from around the world to take part, and 100% of every donation goes towards the prize.

Helping spread the word

Prize4Life CEO Shay Rishoni is a 48 year-old dad of two boys and was an Ironman triathlete before being diagnosed with ALS in August 2011. Within three months he saw his ability to use his arms weaken considerably while no other body parts were affected. Less than two years later he was completely paralyzed and breathing with a ventilator. We caught up with him to help spread the word and learn more about the Challenge, why he thinks the prize is so important and why he works so hard.

Can you tell us a little about your own journey with ALS?

I was diagnosed with ALS 3.5 years ago, when I was 45 years old, a CEO of a company, an Ironman, a pilot, a military colonel (in res.) and a family man with two young sons. Given all of that, receiving a diagnosis of ALS was of course not what I had planned! But I knew that like everything else in life, I will make sure to stay true to myself and my values nonetheless- to stay positive, active and entrepreneurial. That meant in my public life to fight for the development of treatments- and a cure!- for ALS, for current patients like me, but mostly for future patients. In my private life, as a husband, as a friend and as a father to fight to feel and know that Life is Good, and winning is a way of life. Although by now I am fully paralyzed, I believe that as long as I dream up plans and then work to make them happen, I am invincible.

You can see more of me explaining it in this video of my TED talk.

How did you become involved with Prize4Life and the ALS Stratification Dream Challenge?

I first learned about Prize4Life from its founder, Avi Kremer, who is also an ALS patient. Avi was diagnosed with ALS 10 years ago, as a 29 years old Harvard Business school student striving to make finding a cure for ALS a viable business. He was the recipient of the 2011 Israeli Prime minister award for innovation and entrepreneurship in the non-profit sector. I was inspired by his strength, courage and sophistication, and with Prize4Life model and important work and I knew that this is a framework with which I will do important meaningful things for ALS research, and I become the CEO in 2013.

One such important thing is the ALS Stratification Dream challenge. I think it’s a unique and highly innovative initiative. From a patient perspective it addresses a critical question- How can patients with a rare disease create meaningful solutions for their own illness? And the answer is by engaging as many stakeholders as possible. The “Fund the Prize” campaign is the first of its kind effort to make the path for accelerating drug development completely open- the patient data is open access, the research is open, global and collaborative, and the funding is crowd-based. It builds on Prize4Life’s database of ALS patients- the largest ALS clinical trials database in the world. Sage Bionetworks and DREAM, our collaborators, have created a synergistic competition concept and cloud-based computing platform to allow a planetary republic to use the data. Together we will get computational solutions that will tell us why patients are so diverse- from Lou Gehrig’s succumbing to the disease within two years to Stephen Hawking’s 50 years odyssey with ALS. The Challenge, opening in Spring, 2015, will be a worldwide cloud-based competition designed to spur the development of computer algorithms that effectively predict which ALS patients will experience rapid disease progression and which patients will live longer.

Why do you think the prize model is so important?

Prize4Life’s prize model is inspired by similar programs such as X-prize for space travel, demonstrated to foster meaningful research. These programs allow bringing awareness and new minds into a field and generate measurable results for well-defined goals. Prize4Life wants to bring all these benefits to ALS- awareness, new minds and measurable, highly needed, results.

Prize4Life aspires to span broad fields of innovation for their importance for ALS: we gave a $1M prize for a medical device that serves as a biomarker for ALS, another prize for developing algorithms that can predict disease progression and we are running a prize for a druggable cure. We believe that biologists, chemists, engineers, clinicians, software developers and all citizen scientists can bring a meaningful change in ALS.

Prize4Life and DREAM have already demonstrated the power of open Challenges to advance ALS disease research. The first ALS Challenge, conducted in 2012 when Prize4Life’s open ALS patient database contained data from about 1,000 patients, leveraged insights from over 1,000 solvers from 63 countries to identify novel methods that have the potential to reduce the costs of ALS drug development by millions of dollars. The winning approaches are now being used in the development of several ALS treatments, and are described in a recent article in Nature Biotechnology (here is coverage by Science news).

Why do you work so hard?

Because I have a lot to accomplish. (“If not me than who? If not now than when?”) ALS is still an orphan disease, still is relatively unknown, and we still see tremendous potential to realize- computer scientists can create solutions for better treatments and care, engineers can create better assistive technology, biologists can create better drugs… I believe everyone can be part of the victory over ALS.

What’s one thing about ALS that you think everyone should know?

That we, the ALS patients, even when we can no longer speak, still have a voice. That we still have big dreams and still work to make them happen, and if enough people will work together, we will win the fight over ALS.

…and that ALS patients can love and be loved.

How do you see open science evolving in the future?

I think open science will only become more important in fostering innovative research ideas from diverse communities. It will allow everyone to be part of the solutions, and that means many more solutions!

Where can someone make a donation to help fund the prize?

“Fund the Prize- Solving ALS Together” is a crowdfunding campaign (running now on Indiegogo.com) and intended to provide the prize money for the Challenge and thereby to bring together renowned scientists worldwide and drive innovation. The crowdfunding will run until January 22, 2015.

Share this post on Twitter and help spread the word for Fund the Prize and ALS.


2014 recap – a year of sharing in the PatientsLikeMe community

Posted December 23rd, 2014 by

Another year has come and gone here at PatientsLikeMe, and as we started to look back at who’s shared their experiences, we were quite simply amazed. More than 30 members living with 9 different conditions opened up for a blog interview in 2014. But that’s just the start. Others have shared about their health journeys in short videos and even posted about their favorite food recipes.

A heartfelt thanks to everyone who shared their experiences this year – the PatientsLikeMe community is continuing to change healthcare for good, and together, we can help each other live better as we move into 2015.

Team of Advisors
In September, we announced the first-ever PatientsLikeMe Team of Advisors, a group of 14 members that will work with us this year on research-related initiatives. They’ve been giving regular feedback about how PatientsLikeMe research can be even more helpful, including creating a “guide” that highlights new standards for researchers to better engage with patients. We introduced everyone to three so far, and look forward to highlighting the rest of team in 2015.

  • Meet Becky – Becky is a former family nurse practitioner, and she’s a medically retired flight nurse who is living with epilepsy and three years out of treatment for breast cancer.
  • Meet Lisa – Lisa was diagnosed with Parkinson’s disease (PD) in 2008, and just recently stopped working as a full-time executive due to non-motor PD symptoms like loss of function, mental fatigue and daytime insomnolence. Her daughter was just married in June.
  • Meet Dana – Dana is a poet and screenplay writer living in New Jersey and a very active member of the mental health and behavior forum. She’s living with bipolar II, and she’s very passionate about fighting the stigma of mental illness.

The Patient Voice
Five members shared about their health journeys in short video vignettes.

  • Garth – After Garth was diagnosed with cancer, he made a promise to his daughter Emma: he would write 826 napkin notes so she had one each day in her lunch until she graduated high school.
  • Letitia – has been experiencing seizures since she was ten years old, and she turned to others living with epilepsy on PatientsLikeMe.
  • Bryan – Bryan passed away earlier in 2014, but his memory lives on through the data he shared about idiopathic pulmonary fibrosis. He was also an inaugural member of the Team of Advisors.
  • Becca – Becca shared her experiences with fibromyalgia and how she appreciates her support on PatientsLikeMe.
  • Ed – Ed spoke about his experiences with Parkinson’s disease and why he thinks it’s all a group effort.

Patient interviews
More than 30 members living with 9 different conditions shared their stories in blog interviews.

Members living with PTSD:

  • David Jurado spoke in a Veteran’s podcast about returning home and life after serving
  • Lucas shared about recurring nightmares, insomnia and quitting alcohol
  • Jess talked about living with TBI and her invisible symptoms
  • Jennifer shared about coping with triggers and leaning on her PatientsLikeMe community

Member living with Bipolar:

  • Eleanor wrote a three-part series about her life with Bipolar II – part 1, part 2, part 3

Members living with MS:

  • Fred takes you on a visual journey through his daily life with MS
  • Anna shared about the benefits of a motorized scooter, and a personal poem
  • Ajcoia, Special1, and CKBeagle shared how they raise awareness through PatientsLikeMeInMotion™
  • Nola and Gary spoke in a Podcast on how a PatientsLikeMe connection led to a new bathroom
  • Tam takes you into a day with the private, invisible pain of MS
  • Debbie shared what it’s like to be a mom and blogger living with MS
  • Shep spoke about keeping his sense of humor through his journey with MS
  • Kim shared about her fundraising efforts through PatientsLikeMeInMotion™
  • Jazz1982 shared how she eliminates the stigma surrounding MS
  • Starla talked about MS awareness and the simple pleasure of riding a motorcycle

Members living with Idiopathic pulmonary fibrosis:

Members living with Parkinson’s disease:

  • Dropsies shared about her frustrating Parkinson’s diagnosis experience and how diabetes might impact her future eating habits

Members living with ALS:

  • Steve shared the story behind his film, “My Motor Neuron Disease Made Easier”
  • Steven shared how technology allows him to participate in many events
  • Steve shared about creating the Steve Saling ALS residence and dealing with paramedics
  • Steve told why he participated in the Ice Bucket Challenge
  • Dee revealed her tough decision to insert a feeding tube
  • John shared about his cross-country road trip with his dog, Molly

Members living with lung cancer:

  • Vickie shared about her reaction to getting diagnosed, the anxiety-filled months leading up to surgery and what recovery was like post-operation
  • Phil shared the reaction she had after her blunt diagnosis, her treatment options and her son’s new tattoo

Members living with multiple myeloma:

  • AbeSapien shared about his diagnosis experience with myeloma, the economic effects of his condition and his passion for horseback riding

Caregiver for a son living with AKU:

  • Alycia and Nate shared Alycia’s role and philosophy as caregiver to young Nate, who is living with AKU

Food for Thought
Many members shared their recipes and diet-related advice on the forums in 2014.

  • April – first edition, and what you’re making for dinner
  • May – nutrition questions and the primal blueprint
  • June – getting sleepy after steak and managing diet
  • July – chocolate edition
  • August – losing weight and subbing carbs
  • September – fall weather and autumn recipes
  • Dropsies – shared her special diabetes recipes for Diabetes Awareness Month

Patients as Partners
More than 6,000 members answered questions about their health and gave feedback on the PatientsLikeMe Open Research Exchange (ORE) platform. ORE gives patients the chance to not only check an answer box, but also share their opinion about each question in a researcher’s health measure. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.

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The Theory of Everything

Posted November 6th, 2014 by

Between the Ice Bucket Challenge and movies like “You’re Not You” (about a classical pianist who is diagnosed with ALS), there has been a ton of awareness going on for ALS, with many efforts focused on the personal stories of people living with the neurological condition. And this month, ALS is being spotlighted again in a biographical movie coming out very soon.

“The Theory of Everything” is about the life of renowned physicist Stephen Hawking, who has been living with ALS since the 1960s. Despite being given a grim diagnosis, he defied all odds and became one of the leading experts on theoretical physics and cosmology. Stephen Hawking’s story reminds us of the reality of ALS, but is also an inspiration to all who are living with motor neuron disease.

The movie premieres on November 7th in the U.S. – check out the trailer below.

 

As many out there might already now, movies like “You’re Not You” and “The Theory of Everything” hit close to home for the PatientsLikeMe family. In 1998, Stephen Heywood, the brother of our co-founders Ben and Jamie, was diagnosed with ALS. Their experiences – as a patient, as caregivers, and as a family led to the beginning of the online community patientslikeme.com.

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Think pink- breast cancer awareness

Posted October 24th, 2014 by

Everywhere you look during October, you’re probably seeing some pink for National Breast Cancer Awareness Month. But it’s about more than just a color; it’s about helping women now by promoting early detection through regular mammograms and working to help those already diagnosed with breast cancer understand the journey ahead.

According to the National Breast Cancer Foundation (NBCF), breast cancer is the most commonly diagnosed cancer in women, and every year, over 220,000 women in the United States will learn they are living with it. It’s not just limited to women, though. Over 2,000 American men will be diagnosed as well. But the earlier breast cancer is caught, the more treatable it is. Learning about proper screening methods (including self-exams and mammograms) and the genetic and environmental risk factors associated with breast cancer can really make a difference.

So this month, think pink to help spread awareness and share about your experiences with the #BreastCancerAwareness hashtag. If you’ve recently been diagnosed with breast cancer, check out Beyond the Shock, a huge online resource organized by the NBCF that includes videos on everything from the basics of breast cancer to treatment options and coping methods. And don’t forget there are more than 1,000 others in the breast cancer community on PatientsLikeMe. If you’re looking for support or have questions, join the community and talk to people who get what you’re going through.

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The Patient Voice- Epilepsy member Letitia shares her story

Posted September 25th, 2014 by

 

 

What would you do if you were living with seizures from epilepsy since you were ten years old? And you weren’t even able to drive a car? Letitia turned others living with epilepsy on PatientsLikeMe and shared about her journey in a recent video. Watch above to see her inspiring story, and how she’s helping others through her own experiences and the data she’s donating on PatientsLikeMe.

 

 

Share this post on twitter and help spread #dataforgood. And don’t forget to check out previous #dataforgood member videos.


A day in the life of Software Engineer Jonathan Slate

Posted April 25th, 2014 by

Our members share a lot about their unique health journeys and experiences here on the blog. Just recently, Kim spoke about her shock with MS, Betty talked about her frustration finding the right diagnosis, and Lori’s been sharing about life on the lung transplant list. And as part of our ongoing “A day in the life” series, PatientsLikeMe Software Engineer Jonathan Slate shared about his own recent journey after his son Nolan’s hand injury. He walked through the whole experience, from Nolan’s initial accident to how a simple CD with some x-rays on it sparked an ‘ah ha!’ moment for him.

 

You started working at PatientsLikeMe about 6 months ago – tell us a little bit about what you do.

I work as a Software Engineer, developing new site features, fixing issues and working with other engineers to come up with creative solutions to the technical challenges of building and maintaining the PatientsLikeMe site. I’ve also done some work on the PatientsLikeMe Open Research Exchange project.

You’ve said you experienced two “eureka” moments at PatientsLikeMe – what happened, exactly?

Well, the first was on the PatientsLikeMe forums, where I found out, first hand, just how comforting it can be to share a difficult story with patients like me who can truly empathize with my own personal struggles. But it is the second eureka moment that I want to tell you about.

When I started working at PatientsLikeMe six months ago, I thought I basically got it. As a software engineer, there were a lot of opportunities available to me, but I chose to work at PatientsLikeMe because I could see they were an innovative company with a positive mission, passionate leaders, and energetic, thoughtful, and enthusiastic employees.

Then, a couple of weeks ago, my 12 year-old son Nolan was playing “crab soccer” in gym class. Crab soccer is like soccer, but played on all fours, with belly buttons pointing towards the caged lights in the gymnasium ceiling. Kids scuttle around trying to kick a giant ball without losing their balance. At some point during the game, Nolan bent his left hand back too far and heard a popping sound (ouch!). He went to the school nurse, and there was some swelling, so she gave him some ice and sent him back to class. Then came the sage advice of his fellow fifth graders, “It will feel better in one hour,” and “If you can move it at all, it’s not broken.” Wrong on both counts, as it turns out.

By the next morning it didn’t feel any better, and Nolan’s hand had swollen considerably. So we took him to the pediatrician. The doctor thought it was probably just sprained, but she ordered an x-ray just in case. When we met up with the pediatrician again, she showed us the images, and even to my untrained eye, there was a clear break. So they wrapped him up in a splint and gave us the contact info for a hand specialist. We left the office carrying a CD with the x-rays to bring to the specialist. Of course, being an engineer, I couldn’t help but think this system was a bit antiquated. Hand delivering a CD, I mean, really!?

But when we got home, my first thought was to pop the CD into the computer and get another look at the x-rays. I thought my wife might like to see them, as well. But when I put the CD into our home computer, there were just a bunch of weird files, no images as far as I could tell. After an hour or so of jumping through a number of technical hoops, I managed to get an application installed that could read the files on the disk. What came up wasn’t just some image files, but a medical record of sorts, with the images and a bunch of metadata. I showed the clearest x-ray to my wife. “Wow, that’s a pretty good break,” she said. “Can you send me that so I can put it on Facebook?” So I emailed it to her and I also printed out a couple of copies for Nolan to take to school and show to his friends.

The eureka moment didn’t come until I was on my way into work the next morning. Nolan and I had left the pediatrician with a CD full of useful medical data related to his condition, but the only reason we had it was so that we could deliver it to the next doctor. There was no expectation that we would actually want to look at the x-rays ourselves, and in fact doing so required technical skills beyond that of the average person. And if it had not been for the “antiquated” system in which CDs are delivered by patients, by hand, we never would have had the data in our possession at all.

How has Nolan’s experience changed your perspective on the relationship between healthcare, technology and data donation?

I know that a broken hand is small potatoes compared to what many PatientsLikeMe users have to deal with every day. But I still think there’s something to learn from this experience. Dealing with a broken hand is a pain. Nolan’s saxophone and drums are on hold. He can’t participate in all the outdoor activities he would like. But having those x-rays helps to make the experience a bit more tolerable. Having these images puts my wife, Nolan and I more in control. We have a better understanding of what is happening, and we can choose to share the information we have – how we see fit. And that is what PatientsLikeMe is all about: putting patients in control of their own health and data.

Finally, how is Nolan doing? Is he back playing drums and soccer yet?

Nolan is doing pretty well. His hand is in a splint, not a cast, which does make some things easier. And he got his friends to sign the velcro straps, so he didn’t miss out on the “fun” part of breaking a bone. But he can’t wait to get it off. Today I had to tell him he couldn’t go out and play baseball with his friends. But he can play soccer, as long as he doesn’t try to do any throw-ins. Drums and sax are still out, but he will be playing xylophone, one handed, in an upcoming school concert!

We’ll be continuing with more “Day in the life” portraits featuring PatientsLikeMe employees from different departments, so stay tuned for more! You can also check out some of our previous entries by clicking here.


Interested in joining our engineering team and making a difference in patients’ lives? Check out our Careers page to see our current job openings.


The Patient Voice- Parkinson’s member Ed shares his story

Posted April 21st, 2014 by

 

Back in March, we shared some of our infographics and videos on the blog, and as part of our #dataforgood initiative, PatientsLikeMe member Ed spoke about his experiences with Parkinson’s disease and why he thinks it’s all a group effort. Click above to watch his video, and keep an eye out for more interviews with PatientsLikeMe members talking about what #dataforgood means to them.


A day in the life of Social Media Specialist Jesse Smith

Posted November 25th, 2013 by

jsmithOur members give us a glimpse of their personal lives every single day when they share through their PatientsLikeMe profiles, and as the days tick down until Thanksgiving and Christmas, we’re getting into the holiday spirit by sharing a little about ourselves with you.

Jesse Smith is the Social Media Specialist on the marketing team at PatientsLikeMe, and the Boston college alum/avid chef recently sat down and answered a few questions about her PatientsLikeMe experience.

How did you first learn about PatientsLikeMe? What led you to join the marketing team?

I first learned about PatientsLikeMe when I was looking for positions in health marketing. I saw their posting for a Social Media Specialist, so I looked into the company. I was immediately impressed and excited, and started reading and watching everything I could about the company. It turned out that a fellow Boston College alum, Lori Scanlon, was the VP of Marketing and Communications, so I sent over my application to her right away. I was thrilled when I was offered the position, and couldn’t wait to get started!

Tell us a little bit about you. Rumor has it that you’re quite the cook.

I’m no Julia Child, but I certainly love to cook. Once a week, three of my friends and I get together to cook new recipes. It certainly makes things easier to have 8 hands working in the kitchen! I also love to play tennis whenever I get the chance. I need to practice as much as possible so that I can soon beat my boss, Brian Burns, who sadly took me in a 6-3, 6-2 game earlier this summer. I’m also a big BC Hockey fan, cat-lover and singer.

How do you see social media contributing to the future of medical research and PatientsLikeMe’s vision of changing healthcare, for good?

Social media is a valuable tool for moving the vision of PatientsLikeMe forward. PatientsLikeMe is committed to openness, and social media helps enhance our ability to be true to our core value of transparency and add to the collective knowledge of our social community. On Facebook, we’re able to connect with members and build a relationship that compliments the conversations happening on our site. The fast-paced world of Twitter allows us to enter into conversations with non-members, members, and industry leaders all together in real-time to get them the information they need in an easily digestible and shareable form. For example, we recently participated in a live tweet event around a Google hangout on the topic of sleep, which let all our followers and non-followers see the exciting new findings from PatientsLikeMe on stress and insomnia. That type of message would have been a lot more difficult to get across to multiple populations in the same way with more traditional marketing techniques. Social media is fun, fast and easy to use – so it’s the perfect way to connect people to each other, to us and to our mission.

What’s your favorite part about working at PatientsLikeMe?

Call it a cop-out if you will, but I can’t pick just one! I love the freedom I have in my position to be creative, the opportunity the company provides to learn anything I’d like and the ability to work with patients to advance healthcare on a daily basis. I truly appreciate that the people who work here are smart, dedicated and value a work-hard, play-hard culture. All the snacks in the kitchen and awesome places to walk to for lunch don’t hurt either!

We’ll be continuing with more “Day in the life” portraits featuring PatientsLikeMe employees from different departments, so stay tuned for more! You can also check out some of our previous entries by clicking here.


Interested in joining our engineering team and making a difference in patients’ lives? Check out our Careers page to see our current job openings.


We’ve got a new look!

Posted October 15th, 2013 by

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You probably already noticed, but the PatientsLikeMe blog just got a facelift. It’s all part of our ongoing effort to create a better site experience, and the feedback we’re getting from members is guiding us every step of the way.

Check out all the upcoming site upgrades in Kim Goodwin’s post. Like she says, “nearly all of the changes you see in the next month will be cosmetic.” As always, we look forward to your feedback– let us know what you think of the new look. Together, we’ll continue to make the blog a great place to learn from real-world patient experiences and discuss the future of healthcare.