20 results for “"a day in the life"”

Worth a thousand words: A day in the life of Larry

Posted April 14th, 2017 by

As a child, Sarah Howell loved art. She got her first camera at 6 years old and realized, over time, that she had a way of connecting emotionally and expressing herself through photos. Now, she has her own studio. Her passion? Capturing genuine family moments. Sarah often stays overnight in the home of the family so she can spend the entire next day with them, from start to finish.

A day in the life of Larry Tyler

© Sarah E Studios  |  www.sarahestudios.com

© Sarah E Studios  |  www.sarahestudios.com

When Sarah’s friend, Teri, asked her to capture a day in the life of her father, Larry Tyler, she was both shocked and honored. Larry, living with ALS that required 24-hour care, wanted the photos released to raise awareness and funding for ALS.

Sarah was there with her camera, from Larry’s wake-up at 10:30am, until he went to bed that evening. What emerged was a series of 24 deeply moving photos that capture a day in the life of Larry and his family.

© Sarah E Studios  |  www.sarahestudios.com

© Sarah E Studios  |  www.sarahestudios.com

While she was prepared for sad moments with the family, she wasn’t prepared for the level of caregiver exhaustion she witnessed. For Sarah, the realization that ALS is a family disease was the hardest part of her visit.

 

© Sarah E Studios  |  www.sarahestudios.com

© Sarah E Studios  |  www.sarahestudios.com

Despite the hard moments of exhaustion, chaos and frustration, Sarah also witnessed how Larry and his family coped: with laughter and humor.

© Sarah E Studios  |  www.sarahestudios.com

© Sarah E Studios  |  www.sarahestudios.com

Reflections

After this time with Larry and his family, Sarah now wants to photograph a day in the life of one person living with ALS every year. Even though she doesn’t have a personal connection to ALS, she feels that this story could resonate with other caregivers. She shared her collection at a gallery and was moved by the reception.

Sarah hopes the collection will not only raise awareness for ALS, but also to increase awareness of the need for caregiver support and therapy. In the meantime, she hopes that her photos can do some good.

Check out the rest of Sarah’s 24 photo collection with Larry.

Find other ALS caregivers

Do any of Sarah’s photos resonate with you? Share in the comments.

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A day in the life of User Experience Designer Flavia Gnecco

Posted October 21st, 2015 by

By now, you’re probably familiar with our “Day in the life” series. But in case you haven’t had a chance to check it out, here’s a quick overview: members of the PatientsLikeMe community share a lot about their health journey and experiences on the site. In turn, we like to share stories from the PatientsLikeMe team every now and then to help everyone get to know us, what we do and why we’re happy to be a part of PatientsLikeMe.

Today, we’d like to introduce you to Flavia Gnecco, a User Experience Designer on our UX and design team. Flavia, a world traveler, joined us last October (happy 1 year anniversary, Flavia!). Read her interview below, and don’t forget to take a look at the other posts in the “Day in the life” series if you haven’t already.

1. How did you first hear about PatientsLikeMe? What brought you to the organization?

I first heard about PatientsLikeMe while I was working at NIBR (Novartis Institute for Biomedical Research) back in 2012. The name came up while brainstorming around how researchers could find out about actual patient experiences. Fast forward a two years later and I came across a job posting for user experience designer at PatientsLikeMe. The name had stuck in my mind. When I learned how PatientsLikeMe was founded, I was sold – it is so authentic and the mission is one that I knew I could stand behind. I got into design specifically so I could work on projects that were having a positive impact on the daily lives of others. I studied Industrial Design in grad school and never thought I’d end up working for a website but when I realized that the process was the same and the outcome was exactly what I was hoping to achieve, it made a lot of sense.

2. Tell us a little about your role as a user experience designer. What kind of projects are you working on right now?

Right now I’m working on a few things. My biggest project so far has been to figure out the first steps towards improving how members can record their experiences, with different conditions. It’ll make things more engaging and the result will be more meaningful to our users. For now that means I’m doing a lot of sketching for how different interactions might work on the site (i.e. if you click a button, what should happen next?).

I collaborate a lot with the engineers who make sure things actually work on the site, and the UX team also works very closely with the health data integrity (HDI) team to design questions and make sure they are accurate but also sound like a human wrote it. Admittedly, it’s a work in progress! While I was in design school I specifically remember saying, “You can apply the design process to anything – you can even design how you ask a question!” Who knew I was predicting my own future? 😉

I’m also working on an ethnography project and get to talk directly to people who are figuring out how to live with a chronic condition. This is really inspiring and I know will influence how I think about the rest of my work – and my life!

3. What’s your favorite part about working at PatientsLikeMe?

Just one?! The people – definitely. There is always an interesting conversation happening and I’m constantly learning something new. I’ve been here a year now but I have yet to be bored. I take that as a good thing. I also really like the fact that PatientsLikeMe is an organization that’s trying to do right in the world. I’ve learned from experience that it’s very important to me. Oh – and bonus – I get to be mentored directly by Kim Goodwin and Robert Reinman.

4. You’ve traveled all over the world and are fluent in 4 languages. What’s your favorite destination outside of the U.S. and why?

Tough question! I’m lucky that I have multiple places that I can call home that are also incredible destinations (Florence, Italy; Lima, Peru; and in the US, Boston; New York; San Francisco) I get to go to those places almost every year.  My two-year-old son has already been to all those locations except NYC…but that’s already in the works.  I don’t know what I’d do if I couldn’t travel!  But honestly, my favorite destinations are all those places I still haven’t been to. I’m definitely a fan of the journey and discovering new places but I’m a quiet adventurer – more on the foods, museums, dramatic landscapes and hikes. High on my list of things to do soon is to buy a round-the-world ticket.

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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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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.


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.


A Day in the Life of Health Data and Drug Information Clinical Specialist David Blaser

Posted January 11th, 2013 by

What’s it like to work at PatientsLikeMe?  We are continuing to reveal just that with our ongoing blog series “A Day in the Life,” which features PatientsLikeMe employees from different departments.  Today we’d like to introduce you to David Blaser, PharmD, a registered pharmacist who decided to trade his white lab coat for the more casual dress of the startup world in early 2011.  Find out what drew him to PatientsLikeMe, how his pharmacy background factors into his work and more.

1.  What led you to join PatientsLikeMe?

My journey had a few twists and turns, but now that I’m here, I can’t imagine working anywhere else.  I started studying pharmacy at Northeastern in 2003. Toward the end of my time there, I started to consider the career paths I could take and didn’t find any of the traditional ones particularly compelling. Maybe it was part of being young and naïve, but I continually was disappointed and perplexed by our healthcare system in the US. I felt like there had to be a better way.

David Blaser

Then I took a great class called Pharmacoeconomics and Health Outcomes. During this class, you take a medical question (e.g., Should I take drug A or drug B for this problem?) and develop computer models that take into account how it would affect the overall health of the population. It made perfect sense to me, and I didn’t understand why this wasn’t done in our system.

Fascinated with this area of medicine, I started a two-year research fellowship at UMass Medical School to learn more about it. During this time, I worked on lots of models examining conditions from insomnia to hepatitis C. Toward the end, I was looking at career opportunities in this area and got an alert about a posting on PatientsLikeMe. I was amazed how the system PatientsLikeMe had put together was even better than the models I was working on and how it could revolutionize our healthcare system. So I immediately contacted Paul Wicks, the head of R&D at PatientsLikeMe, and was able to set up an internship to work a few days a month on various projects. This eventually turned into a position on the Health Data Integrity Team with Christine Caligtan, Sally Okun and Shivani Bhargava.

On a more personal note, during this time my family and I went through the death of my brother due to substance abuse. This has had a deep impact on me and made me reflect on how can I help others avoid a similar fate. One of my long-term goals at PatientsLikeMe is to develop a better support community for other patients with substance abuse disorders.

2.  What’s surprised you the most about the health startup world?

The majority of my previous work experience was in pharmacies, which is one of the most heavily regulated professions. The amount of documentation, guidelines and laws you have to follow is staggering. When I started at PatientsLikeMe, I would find myself asking, where are our guidelines or what is the protocol?  I remember asking Co-Founder Jamie Heywood, and his response really changed my way of thinking.

He told me that no one else has ever tried to do what PatientsLikeMe is doing and there is no rule book. When you reflect on it, it is amazing to be part of the first company to try to accomplish our mission and develop a rule book for something that’s never been done.  Besides this, there is nothing better than having a job where you can have a beer in the office at the end of a stressful day and others join in with you.  (This is frowned upon in hospitals!)

3.  How does your doctoral and fellowship training inform your work?

While at Northeastern, I completed a doctor of pharmacy degree (PharmD). This gave me the knowledge needed to maintain our drug database and think about how medications should be added to our user profiles. There is still a lot to be done in this area, but I’m looking forward to improving it as we continue to develop our site.

David Blaser (second from left) at play

While at UMass, I studied the different ways that ‘health’ can be measured. This seems like something that should be straightforward, but I found a whole new way of evaluating medicine and health. In theory, you give one group a drug and give another group a sugar pill and see who lives longer, but many patients don’t have the time for that. We need to get answers now, so how can we measure more intermediate outcomes to give us a clue about which medications work better? And what about medications that don’t make you live longer, but make your life better? It’s a difficult process that will never be perfect, but I think that the surveys and tools PatientsLikeMe has developed do an excellent job of measuring these things.

4.  What are the challenges of overseeing the wealth of drug information on the site?

People love sharing information! I recently talked with a member who entered information related to a hand injury they experienced while cutting some fruit, including every nerve and tendon that was injured and the different surgeries and operations to heal it. We love that people share such detailed information, but it can create some difficulty in designing profiles so that they are not overwhelming.

As for the drug information on the site, there are many ways that medications are formulated and taken that are difficult to show in the system. Medications can have different dosages, different formulations (e.g., creams, syrups, pills, injections), different schedules (e.g., take one daily, take one every six weeks, etc.), and they can come in a variety of combinations with other drugs. Not to mention the same medications may be available as a prescription drug, over-the-counter drug and supplement all at the same time. The medication databases that are available don’t always meet the needs of our users, but I do my best to put the right information and options in front of them.

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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 Senior Visual Designer, Client Services Program Director, HEOR Research Scientist and more at the moment.


A Day in the Life of Health Data and Patient Safety Clinical Specialist Christine Caligtan

Posted December 5th, 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 PatientsLikeMe employees from different departments.  Today we’d like to introduce you to Christine Caligtan, RN, MSN, a registered nurse who has served as our Health Data and Patient Safety Clinical Specialist since May 2011.  Find out what that involves, why she made the switch to the health startup world and much more in our interview.

PatientsLikeMe Health Data and Patient Safety Clinical Specialist Christine Caligtan, RN, MSN

1.  What’s it like to be a registered nurse at a health startup?

I could not be happier as a registered nurse at PatientsLikeMe. It’s the best of both worlds: I get to interact with patients online, and I am satisfying the informatics side of my interests by working the patients’ data and fostering their ability to track and maintain their health with online tools.

When I started working as a nurse I never thought my career path would lead me to a health startup. As I encountered different clinical settings and patient experiences, I knew that technology was the key to advancing healthcare.  From that point, I decided I wanted to work in the field of nursing informatics. The first step in that direction was when I was asked to join a multi-disciplinary team to help build and design an electronic health record (EHR) for a hospital in New York City.  Linking the patients and the healthcare team to the power of technology is extremely satisfying.

I first learned about PatientsLikeMe when I was in grad school.  I was taking a course called Consumers and Interactive Healthcare, and my professor and advisor Lena Sorenson shared with us some of the innovative health companies for consumers, and PatientsLikeMe was one of them! In fact, Lena encouraged me to apply to PatientsLikeMe since I was looking for a shift in my career.  It has turned out to be a perfect fit.

2.  What kind of projects are you working on right now?

We have been working on some improvements for our epilepsy community, making existing tools easier to use and investigating how to better connect doctors and patients. Then, on a daily basis, David Blaser, our Health Data and Drug Information Clinical Specialist, and I curate the data that our users submit to us. Any time there is a condition, treatment or symptom that our users cannot find in our database, we review it and add it to our growing database of patient-reported data. Our job is to ensure we maintain structure and organization with all of the data.

3.  You lead weekly yoga classes for PatientsLikeMe staff.  Tell us about that.

One of the definite highlights of my job! Every Wednesday I have the privilege of leading a small group of staff in a 90-minute Hatha/Vinyasa yoga class. I completed my teacher training during the summer of 2011 at South Boston Yoga. When I came back from training, there was a lot of interest and support in having me teach at work. It’s been a lot of fun and has helped me grow my practice in so many ways.

Christine Leading a Yoga Class at PatientsLikeMe Headquarters

Every week we roll out our mats and practice yoga together. All of my office mates know that Wednesdays at 5pm in Siberia (our back office space) is yoga time.  To counter the frenetic energy in the office, I like to begin class with meditation and some grounding poses and then slowly turn up the heat with the more challenging poses. We practice together to honor the time and space that we create for ourselves so that we can be our best selves.

4.  What are your three favorite things about working at PatientsLikeMe?

I am in constant amazement of the dedication to creating a meaningful experience for our patients and clients. I like our office camaraderie and commitment to creating change within healthcare. And of course, I love our weekly Wednesday yoga days. We rock out, sweat and play, and that’s my ideal end to a work day.

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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 to hire an Analytics Strategist / Data Scientist, Chief Technology Officer, Data Visualization Engineer / Chart Developer and more at the moment.


A Day in the Life of PatientsLikeMe Web Developer Adam Darowski

Posted October 19th, 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 PatientsLikeMe employees from different departments.  Today we’d like to introduce you to Adam Darowski, a father of three who joined the technology team as a web developer exactly three years ago.  Find out why he had a crush on the company long before he came to work here and more in our interview.

PatientsLikeMe Web Developer Adam Darowski with Each of His Kids

1.  What led you to join PatientsLikeMe in 2009?

I had been a big fan of PatientsLikeMe since late 2006 when I originally met Co-Founders Ben Heywood and Jeff Cole. Over time, it became more and more clear to me that my next position would be with PatientsLikeMe. First the company hired Kate Brigham (who I had known for quite a while), then I met people like Cris Necochea and Rich Thornett. I knew it was a special place with special people.

What ultimately led me here in 2009 was the opportunity to do some things that were very important to me. I want to make PatientsLikeMe an incredible resource not just for patients living chronic conditions, but also for parent caregivers of children with developmental and chromosomal disorders. We’ve made some progress on that front but still have a lot of work to do.

2.  Give us a slice of life as a web developer.  What are you working on currently?

We just finished Wow Week, which is pretty much my favorite thing in the world. [Occurring every six weeks, Wow Week is a week of unstructured time in which the PatientsLikeMe technology team can work on and present their own ideas.]

I worked on some concepts for what PatientsLikeMe could look like if it was focused exclusively on parent caregivers. So, this involved some user research (not a ton, since it was only a concept and I only had a week), user interface design, and a lot of visual design. Since I also love to get in the code, I then worked with Michael Berkowitz to start building it out some of the features. My main focus there was on the home page, building a design that would work well whether you looked at it on a phone or a 24-inch monitor.

During more typical weeks, my time is spent building and improving site features. I’m a “front end” guy, which means I don’t really do any hardcore software engineering. Rather, I build the part that you actually see and interact with. I also like to chip in on the design side of things, whether it is on new features or just adapting an existing design for new requirements or different scenarios.

3.  What would you tell someone who’s considering joining the technology team?

I would tell them that this is a very passionate, bright, motivated and diverse team, and I’m honored to be a part of it. PatientsLikeMe isn’t a place to go if you have a big ego. We work together, we collaborate, we give and receive constructive criticism, we strive to make each other better, and we strive to give our members the best user experience possible. If you want a genuine, honest-to-goodness chance to build something that has a chance to change the world, this is where you want to be.

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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 to hire a Senior Ruby on Rails / Web Application Developer, Business Development Manager, Graphic Designer and more at the moment.


A Day in the Life of PatientsLikeMe Quality Assurance Engineer Brian Boyle

Posted September 19th, 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 DuttonResearch Scientist Timothy VaughanBiz Dev’er Arianne GrahamProduct Manager Maureen Oakes and Community Manager Jeanette DeVita.  Today we’d like to introduce you to Brian Boyle, who joined the company six months ago to help us maintain excellent quality assurance (QA).  What that means is that when you find a bug in our platform, Brian is the guy who makes sure it gets fixed!

PatientsLikeMe Quality Assurance Engineer Brian Boyle

1.  What’s surprised you the most since joining PatientsLikeMe in March?

PatientsLikeMe is an amazing office to work in. I was immediately welcomed by a team of talented and brilliant individuals. The people here are so nice to be around. The bar of excellence is raised daily, and we challenge ourselves to produce the best possible product. Every morning I arrive to an atmosphere that is rich with confidence and satisfaction of our product.

2.  Tell us about the role of the Quality Assurance (QA) Engineer.

My job at PatientsLikeMe is to collect bug reports from users and co-workers and send them to the engineers. The engineers take the information, locate the problem and fix the code that caused the error. When I collect the bug reports, I research what is causing the problem and prioritize the bug queue. The bugs on my radar are ones that a user would find and that could disrupt their experience on the site. Solving these problems is very rewarding and important for the user experience.

3.  What do you find satisfying – as well as challenging – about your job?

Working closely with users to understand their perspective and then carrying that viewpoint to the engineers is my first priority. It can be challenging working through the volume of requests and researching all of them, while putting them in an acceptable order to be fixed. Fortunately, the engineers are very helpful, offering insights and understanding. I sit with a team of amazing developers I can turn to and ask for help. Working with the engineers to solve problems is immensely satisfying.

4.  I understand you have a lot of active hobbies, such as rock climbing and skiing.  How does that fit into your approach to wellness?

I have found that engaging my mind and body in physical activity encourages a healthy perspective to my thought process. My time away from work is spent working on goals and physical challenges. I have a few different levels of activities that I use to distill my thought process and better serve my prioritization skills.

Brian Boyle Doing His Favorite Activity:  Skydiving

Skiing and team sports are hobbies that I do every once in awhile that allow me to focus on something new for a day. The next level of activities are accomplished a few times a week; rock climbing, yoga, mountain biking and road biking are things I can do after work. My favorite activity is skydiving. I have been jumping out of planes (almost) every warm weekend since 2007. I have over 550 jumps, and I am a tandem instructor at Jumptown in Orange, MA.

My passion in skydiving is tandem jumping and big way jumping. Tandem jumping is hooking up a first jump student to my parachute and taking them on their first skydive. Big way jumping is when I take my own parachute and go up with 60 of my closest friends and jump out of three different airplanes at the same time. I use skydiving to set long term goals. It can take years to attain certain skills in skydiving, and accomplishing those goals is very rewarding.

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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 Marketing AnalystOutcomes Research Scientist and more at the moment.


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.


A Day in the Life of PatientsLikeMe Product Manager Maureen Oakes

Posted June 20th, 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 and Biz Dev’er Arianne Graham.  Today we’d like to introduce you to Product Manager Maureen Oakes, or as she’s affectionately known around the office, “Mo.”

PatientsLikeMe Product Manager Maureen Oakes

1.  You’re the Product Manager at PatientsLikeMe.  Tell us what that involves.

A little bit of everything! I read in an article that product managers are like “embedded CEOs” because you drive the core decisions to improve and change the product, which in this case is the PatientsLikeMe website. That means different things depending on the circumstances. Sometimes my job is getting all the right people in the room to make a decision, and sometimes it is making a decision myself. In all cases, it involves listening, asking good questions, weighing all the options and following up to make sure what needs to get done actually happens.

Each day I split my time between planning ahead for enhancements we could make to the site in the coming weeks and months and ensuring the things the engineering team is building now are going smoothly.  For example, when we are trying to decide what to work on, we have to ask, “Is A more important than B? What is affected if we choose to work on C instead? Who benefits most from each of those options and how much work is it to accomplish?” It’s my job to tee up those questions so that we are working on the right things at the right time.

The same goes for things we are building now – there are tradeoffs and decisions to be made all day long.

2.  As a longtime employee, what milestones stick out to you?

There are so many! But I think the first would be the launch of the mood conditions community in 2008. I joined PatientsLikeMe in 2007 so it was the first time I participated in building out a community – hearing the research team’s thoughts on disease measures, showing examples to get feedback from patients, and being there to welcome the first members. There was a New York Times Magazine article about PatientsLikeMe around the time we launched, so several thousand people joined that first week. It was amazing to see the community take off so quickly.

In 2010, we started work on another milestone – a project to open up PatientsLikeMe to anyone with any condition. That was a ton of work, but it was great to have the whole company focusing on a very clear goal and working closely together to achieve it. I was especially motivated because my mother was undergoing treatment for lymphoma at the time, and every day I wished we had had PatientsLikeMe members and tools available for her condition. In 2011, she went into remission and PatientsLikeMe opened its doors to anyone with any condition, so that was huge, both personally and professionally.

Maureen's Famous Boston Cream Pie

3.  You’re also the resident baker at PatientsLikeMe.  What treats do you make?

I’m a big fan of celebrating birthdays so my standing offer is to bake whatever a PatientsLikeMe employee requests for his or her birthday each year.

I’ve made all kinds of things – Oreo and whipped cream desserts, carrot cupcakes, brownies, apple cake, triple chocolate cake. But the biggest challenge has definitely been Boston Cream Pie. It is not easy to make, but it’s a huge hit, so now lots of people keep requesting it.

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Want to make a difference in patients’ lives?  Maureen is currently searching for a Senior User Experience (UX) Designer to join her team.  “This may be my biggest project right now!” she says.  “We already have one great designer, but we need help to keep improving the site at a faster pace.”  Learn more about the benefits of working at PatientsLikeMe on our Careers page.


A Day in the Life of Biz Dev Team Member Arianne Graham

Posted May 16th, 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 and Research Scientist Timothy Vaughan. Today we hear from Arianne Graham, a Harvard MBA graduate who joined the business development team in 2010.  What current project is she most excited about?  And how is working at PatientsLikeMe different than her previous healthcare jobs?  Find out that and more in our interview.

1.  What’s it like to be part of the business development team?

When spending time with friends and family or even meeting new people, I’m always excited to answer that small talk question: “What do you do?” I happen to think I have the best job ever.

Arianne Graham, Business Development at PatientsLikeMe

As part of the business development team here at PatientsLikeMe, my colleagues and I work with everyone who cares about patients (including providers, researchers, pharmaceutical companies, insurance companies, pharmacies, and many more!). We look at how the real-world data shared by our members can transform their businesses for the benefit of patients everywhere.

Sounds like fun, right? Most of the time, it really is. This is also hard work, though. Sometimes I feel as though the rest of the world is not yet ready to hear the patient’s voice. The truth of each patient does not always fit perfectly inside the constraints of a randomized clinical trial or a research protocol. But it’s here to stay, and we are actively finding ways to layer this emerging data source on top of the world in which we live. That’s reason enough for me to get up every day and come to work with my very talented team.

2.  What kind of projects are you working on at the moment?

I am often the first contact for individuals and organizations that contact us via partners@patientslikeme.com or support@patientslikeme.com. We receive multiple messages a day with ideas regarding how PatientsLikeMe might work with another company or integrate a new technology. It’s up to me to prioritize which opportunities to pursue now given the market landscape, and which to save for later.

One of our most basic and popular services is clinical trial recruiting. On any given day, I have to do something related to one of these campaigns. The members that use PatientsLikeMe are probably more likely than most to be motivated to try investigative therapies, to access better healthcare, or to simply participate in research. Finding the right patients for a study can be so difficult, but thanks to the demographic and health data patients report to us, we can easily let patients know about clinical trials for which they may be eligible.

The Clinical Trial Matching Tool at PatientsLikeMe

The project I am most excited about, however, is a clinical trial of PatientsLikeMe as an intervention. We have partnered jointly with a pharmaceutical company and an integrated payor/health system to empirically test the effects of the website on patient activation and health literacy. Additionally, this is one of the first projects to really integrate PatientsLikeMe into the clinical encounter between doctor and patient. We haven’t publicly announced the details yet, so stay tuned. I can’t wait to tell you more!

3.  How have your parents – who are both doctors – influenced your career?

As the child of two pediatricians, I know I was exposed to the healthcare industry and certainly aware of it more early in life than most people. I noticed and appreciated that they treat their patients as people, not diseases. They remain committed to serving their patients, to helping them get better so they can lead productive lives. For them, the medical field is not so much a job as a calling. I know I felt led to serve, too. Even when I abandoned my pre-med plans in college, I knew that healthcare is where my heart is. I just found another way to pursue it.

I cannot imagine working outside of this industry because it appeals to me on so many levels: I can serve others, and I’ll never get bored. Healthcare is what we used to call in consulting a “big, hairy, ugly.” It is messy and complicated, it affects us all, and there are no clear answers. All of that makes this sector intellectually stimulating and extremely rewarding.

4.  You’ve worked for pharmaceutical companies, a hospital and a consulting firm.  How is working at PatientsLikeMe different?

I think all of my previous work experience has prepared me well because I lean heavily on what I know to be true in healthcare in my current role. While I knew exactly what to expect in pharma, hospitals, and in consulting, PatientsLikeMe has proven to be a bit like the Wild Wild West. We are creating a world that never existed before: where patients take charge, and their real experiences are being integrated into the healthcare system around them. There are absolutely no rules yet. It’s exciting and uncomfortable; inspiring and frustrating. And you know what? I wouldn’t have it any other way.

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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 Marketing Coordinator, Community ModeratorResearch Client Manager and more at the moment.


A Day in the Life of PatientsLikeMe Research Scientist Timothy Vaughan

Posted April 20th, 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 Necochea, Research Assistant Shivani Bhargava and Office Manager Alison Dutton.  Today we hear from Research Scientist Timothy Vaughan, who earned his PhD in physics before deciding to focus his simulation and modeling skills on medical questions.

1.  What research projects are you working on at the moment?

I am working on a few different things. My primary focus recently has been on modeling multiple sclerosis (MS). As just about anyone with the disease can tell you, MS is a highly complex, highly variable illness. To even get a good description of the experience of a patient is a challenge. As one of the “mathy” people at PatientsLikeMe, my job is to try to make the description as systematic and quantitative as possible, because mathematical relationships are often the best tools in trying to solve the underlying puzzle of what the body is doing.

PatientsLikeMe Research Scientist Timothy Vaughan, PhD

So, for example, I have recently been looking at some of the ways that symptoms and the Multiple Sclerosis Rating Scale (MSRS) are interrelated, which may help us understand how functioning and symptoms go together. And, although I am focusing on MS, I am constantly struck by how certain concepts seem to apply across conditions, so I am hopeful that we can learn things that will ultimately help all our patients.

2.  Tell us how computer simulation and modeling help you do your job.

It is fair to say that my job would not even exist without computer simulation and modeling! Partly because clinical trials and other scientific methodologies have become so expensive and time-consuming, scientists in healthcare have to really become creative in trying to learn more about patients and their conditions. Simulations and modeling are becoming essential tools in the era of “big data” that PatientsLikeMe is at the forefront of.

3.  What do you see ahead in terms of PatientsLikeMe’s research potential?

I have to quote the Danish physicist Niels Bohr: “Prediction is very difficult, especially about the future.” I think almost everyone in healthcare right now believes that patient-reported outcomes are going to be of greater and greater influence in the future…but no one is 100% certain how!

In many ways, research is forced to be in a somewhat opportunistic position, because one is never quite sure where the most promising frontiers are, where one is most likely to discover something interesting and useful for patients. But our research potential really stems from our patients. Their willingness to share how they are doing, in so many ways, gives us potential to not just work on what appears to be interesting now, but to quickly respond to new directions that might arise in the future.

4.  What are the three best things about working at PatientsLikeMe?

For me personally, the best thing about PatientsLikeMe is that every morning I wake up knowing that everything I work on is not just scientifically “interesting” (although I like that!), but also really has the potential to help patients’ lives. So, even though the work can be frustrating at times, it is always worthwhile.

The second awesome thing, and it’s almost a cliché to say around is here, is that the people here are so passionate and smart and great to work (and play!) with. Seeing other people working hard and caring deeply about what they do is a great motivation.  The third awesome thing: Alison makes sure there is a constant supply of York Peppermint Patties in the kitchen.


A Day in the Life of PatientsLikeMe Office Manager Alison Dutton

Posted March 22nd, 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 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.

alison-photo-2

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.

Learn More About the PatientsLikeMeInMotion Sponsorship Program for Disease-Related Run/Walk Fundraising Events

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.