Last month, the Patient Centered Outcomes Research Institute (PCORI) released a funding announcement entitled, “The National Patient-Centered Clinical Research Network: Patient-Powered Research Networks (PPRNs)—Phase One.” Through this solicitation, PCORI seeks to establish a set of Patient-Powered Research Networks (PPRNs) that complement PCORI efforts to establish a national infrastructure of Clinical Data Research Networks through a separate funding announcement.

As an early pioneer of PPRNs, PatientsLikeMe plans to submit at least one Letter of Intent (LOI) to PCORI next month to declare our intention to submit a funding application later this year. We are looking for research partners who share our patient-centric values and desire to build a continuously learning healthcare system to join us as joint collaborators on our June LOI submission to PCORI. We welcome the opportunity to team with academic researchers, pharmacies, clinicians, patient advocacy organizations, and others who wish to partner with PatientsLikeMe.

To that end, we have authored a Request for Proposals (RFP) that outlines the nature of our expected funding application and the information we require from interested collaborators. The goal of the RFP is to identify quality research partners capable of defining high-value, patient-centric research goals worthy of PCORI funding that can be built upon PatientsLikeMe’s existing digital infrastructure and data model. Requirements for responding to this RFP are described in further detail within the RFP itself.

We look forward to receiving high-quality responses to this unique funding opportunity no later than Wednesday June 12, 2013.

And more specifically, can it be used to collect patient data, raise investment funds, make scientific data more accurate and even allow regular people to access the world of venture capital?

This was the provocative question posed to a five-person discussion panel at the 2012 Partnering for Cures conference last fall that included several thought leaders, including PatientsLikeMe’s own Sally Okun, RN, MMHS, who was recently promoted to the position of Vice President of Advocacy, Policy and Patient Safety.

“We have a small subset of people on PatientsLikeMe who have found us and who are gaining some expertise at being what might be called citizen scientists,” says Sally.  “But I think the important piece is that there are so many more people out there that we have to reach and help understand that there is access to so much more information than you are currently getting.  And social media is one way of doing that.”

Tune in below for Sally’s full comments and to hear what the other four panelists had to say about the growing use of social media in science.

Last week, health leaders from around the world gathered in the UK for the Nuffield Trust Health Policy Summit 2013, a two-day event focused on evidenced-based research and innovative solutions to the challenges facing the National Health Service (NHS).  One of the invited speakers was PatientsLikeMe Co-Founder and Chairman Jamie Heywood, who discussed the drug development process as well how patients can drive value in healthcare.  Tune in to hear Jamie’s well-received presentation below, which was titled “Creating a healthcare revolution.”

Health Policy Summit 2013: Jamie Heywood from Nuffield Trust on Vimeo.

Today, February 28th, is Rare Disease Day, a worldwide event showing solidarity with rare disease patients and their families around the globe.  The theme for this year is “Raise and Join Your Hands,” and everyone is being asked to participate, whether you’re an individual, an office with 10 people or a public gathering with 1,000 people.

Here at PatientsLikeMe, we are taking part by raising our hands and sharing our group photo in solidarity with the campaign as well as all of our members living with rare diseases, which affect 1 in 10 people worldwide.  You are encouraged to submit your own photo here.

Rare diseases are a special passion for PatientsLikeMe, as our company was started due to our founders’ experience with a rare disease called ALS (Lou Gehrig’s disease).  Since then, we’ve partnered with the Global Genes Project to form the RARE Open Registry Project to connect patients fighting rare diseases and help them share and learn.

“It’s terrifying to think you’re alone and manage your rare illness with a doctor who might not have ever seen another patient like you,” says PatientsLikeMe Co-Founder Jamie Heywood. “We will change that.”  Most recently, we launched the world’s first open registry for patients with alkaptonuria (AKU), the first genetic disease discovered.

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.

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.

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.

Can a game app lead to better health?  The Robert Wood Johnson Foundation thinks so.  They’ve announced a competition challenging developers to create game apps that “generate useful health care data to improve health and health care.”

The competition will be conducted in two phases. Phase One is an “open ideation phase” where interested developer teams can submit app concepts. From there, the top five teams will be awarded $5,000 to build upon their initial proposals and create working game apps.

What’s at stake?  The developer of the winning game app receives $100,000, while second and third place winners earn $50,000 and $25,000, respectively.  Winners will be announced in September 2013, with the first place winner honored at the Health 2.0 7th Annual Fall Conference.

The deadline for submission is February 22, 2013.  Learn more and register for the challenge here.

Earlier this month, PatientsLikeMe Co-Founder and President Ben Heywood, along with marketing intern Jenna Tobey, went to visit the Steve Saling ALS Residence, which is part of the Chelsea Jewish Foundation’s Leonard Florence Center for Living in Chelsea, MA. The foundation has been providing high-quality care for over 90 years and includes the nation’s only specialized ALS residence.

When Steve Saling was diagnosed with ALS, a rapidly progressive neurodegenerative disease, in 2006, he immediately began to “secure a way to provide for care” as his condition advanced. His expertise as an architect, his keen interest in technology and his diagnosis all proved vital as he worked with Barry Berman, CEO of the Chelsea Jewish Foundation, to create the first-ever, fully automated ALS residence. This state-of-the-art residence soon became a reality and opened its doors in August 2010. Despite this tremendous accomplishment, Steve isn’t done yet. He has also created the ALS Residence Initiative in an “effort to duplicate the project nationwide.” The next facility to open will be in New Orleans.

Steve greeted Ben and Jenna at the door and was excited to get the tour started. Unable to speak on his own, Steve communicates through a sight-based technology that can translate eye movements on a computer screen into audible speech. As he showed Ben and Jenna the residence, Steve demonstrated the independence that advanced technology and the center provide him by opening doors, turning on lights, operating elevators and changing TV channels. The foundation also encourages this independence by getting their residents out and about.  Steve described some of their recent excursions, like going to the movies, downhill skiing at Nashoba and traveling to Disney World.

Steve became a PatientsLikeMe member seven years ago following his diagnosis. Since then, he has been a model community member, regularly updating his symptom reports and frequently chiming in on the ALS forum. In his PatientsLikeMe profile summary, Steve says, “I accept my new challenges and take a great deal of satisfaction in adapting to my losses.” The PatientsLikeMe ALS community is nearing 6,000 members, with patients learning from each other’s shared experiences every day.  Join the conversation anytime; they’d love to hear from you.

To learn more, check out the video below, in which Steve discusses “the dire need for residential living options for the chronically disabled.”

ALS & MS Residences at the Leonard Florence Center for Living from Steve Saling on Vimeo.

What happens when a patient finds another patient like them – for example, someone the same age with the same disease taking the same treatments?  Problems get solved, says PatientsLikeMe Co-Founder and Chairman Jamie Heywood.

Tune in below to hear more of Jamie’s thoughts in his interview with Boston.com, the online home of the Boston Globe, as part of an ongoing series called “The Innovators.” From the front door of our offices in Cambridge’s Kendall Square to the engineering team’s color-coded whiteboard, take Jamie’s insider tour of PatientsLikeMe headquarters and learn more about our mission of transforming healthcare.

The Innovators: Patients Like Me, Meet James Heywood, Innovator, Chairman and Co-Founder from REEL Entrepreneurs, Inc on Vimeo.

For other recent media highlights, visit our Press page.

We are thrilled to announce that PatientsLikeMe Research & Development Director Dr. Paul Wicks, PhD, has been named a TED2013 Fellow.  He is one of 20 individuals to be selected from more than 1,200 candidates to attend the TED2013 conference in Long Beach, California, participate in a preconference bootcamp and receive mentoring from the TED community.

If you’re not familiar with it, TED is a nonprofit devoted to Ideas Worth Spreading.  It started out as a conference designed to bring together people from Technology, Entertainment and Design (T-E-D) and has since evolved into a global movement for sharing big ideas.  In addition to annual conferences in the US and UK (TEDGlobal), which bring together movers and shakers for inspiring talks of 18 minutes or less, TED sponsors local events (TEDx) and shares many of its videotaped talks via TEDTalks and TEDxTalks. (Among them: a 2009 talk by PatientsLikeMe Co-Founder Jamie Heywood, a 2010 talk by Paul Wicks and a 2011 talk by PatientsLikeMe Co-Founder Ben Heywood.)

The theme for the TED2013 conference is “The Young. The Wise.  The Undiscovered.”  Accordingly, this year’s class of TED Fellows represents “young innovators from around the globe, all with insightful, bold ideas that have the potential to influence our world.”  Paul is a perfect fit for this mission, having already been named one of the best young innovators under the age of 35 by MIT’s Technology Review as well as their “Humanitarian of the Year” in 2011.  We know he won’t stay “undiscovered” for long!

A big thanks goes to TEDGlobal 2012 Fellow Max Little, who nominated Paul for this prestigious opportunity.  An applied mathematician who is currently a Postdoctoral Research Fellow at MIT, Max is working on a breakthrough technique to monitor – and potentially screen for – Parkinson’s disease through simple voice recordings.  Learn more about Max’s ingenious idea in his June 2012 TEDTalk below and stay tuned for more coverage of this trailblazing researcher in the coming weeks.

Recently, our ALS community mourned the loss of Persevering, a highly proactive three-star member who was known for his unfailing efforts to support fellow patients, record and share data, report website problems and recruit ALS clinical trial participants.  Offline, he was also a tireless advocate for ALS awareness and research, attending conferences and lobbying on Capitol Hill.  Persevering passed away on September 10, 2012, at the age of 42, and is deeply missed by both our members and our staff.

While we are unable to recognize every member who passes away on our blog, we wanted to take this opportunity to highlight how our community responds to loss as well share what happens to a deceased patient’s profile data.  When our community managers are notified of a member’s death – typically by a family member, caregiver or another member who was close to the person – they add the date of death to the member’s profile. This automatically updates their icon nugget with a black band to show that the member has passed away. (See image below.)

Also, our members often create a forum thread about the member, to which the tag “In Memory” is added by other members or the community manager so that it is searchable and “followable” using this tag. In these emotional threads, members acknowledge the deceased member’s contributions, reflect on the loss to the community and pay their respects.  Essentially, it’s a place for remembering a friend, telling stories, supporting one another, sharing funny memories and sending condolences to the family.

Each month, our community managers update our “In Memoriam” thread in the PatientsLikeMe forum with a list of members who have passed away during the previous month, and they include links to each profile. That way, members who haven’t logged on for a while or may have missed the news of someone’s passing can stay up-to-date.  Members can also choose to “follow” that thread if they wish to be notified whenever there is a new monthly update.

As for the profiles of members who have passed, they effectively create a legacy of data on our site, as their profile pages remain accessible to our members in perpetuity.  As a result, present and future members may continue to access these profiles to compare and learn from similar experiences.  Persevering’s detailed treatment, symptom and disease progression data, for example, will live on as a rich source of information and insight for other ALS patients.  What was his experience in the Phase II Study of NP001?  Read his comprehensive treatment history here.  What side effect led him to stop taking Riluzole?  Find out here.

So as you can see, Persevering is still helping others today, and we thank him for that.  We also want to recognize his contributions to our recent publication about NP001.  We have dedicated this new work to him as it was inspired by his keen desire as a “citizen scientist” to analyze and understand the impact of NP001 on his ALS progression.

As a result of these myriad achievements, Persevering will be posthumously awarded the Stephen Heywood Patients Today Award at the 8th Annual ALS Therapy Development Institute Leadership Summit on November 1st in Boston. Learn more about this beloved and influential ALS advocate by checking out the Facebook page created in his honor, entitled Persevering – You Are a Game Changer.

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.

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.

Did you know that 1 in 10 people worldwide have rare and genetic conditions?

PatientsLikeMe was a proud sponsor of the 1st Annual Tribute to Champions of Hope, organized by our partner the Global Genes / RARE Project. Held on September 27th in Newport Beach, CA, the gala recognized outstanding individuals who are working to affect change in the rare and genetic disease community.  All proceeds from the event – which attracted celebrities, medical researchers, pharmaceutical executives and even Olympic champions – go to benefit programs for patients and advocates.

In attendance from PatientsLikeMe were Ben Heywood, Arianne Graham and Deborah Volpe, who got to hear inspirational stories of the work these champions of hope are doing.  Highlights included the Biotechnology Award given to Charles Dunlop of Ambry Genetics and the Mauli Ola Foundation, which organizes therapeutic surf experiences for kids with cystic fibrosis, and a preview of the documentary Here. Us. Now., which chronicles a family with twin daughters diagnosed with Niemann-Pick Type C, a rare, incurable and fatal genetic disease.  Lifetime Achievement Award recipient Henri Termeer, the former President and CEO of Genyzme, aptly summed up all those who received awards as “people that have a sense that if they focus, they can make a difference.”  (Click here to read about all eight Champion of Hope honorees.)

After uplifting musical performances and talks by celebrity presenters Jason George (“Grey’s Anatomy”) and Nestor Serrano (Act of Valor), the night ended with a heart-stopping, impromptu rendition of “Somewhere Over the Rainbow” performed by several rising singer-songwriters, including Chris Mann and Katrina Parker from the “The Voice,”  Elliott Yamin from the fifth season of “American Idol” and Gracie Van Brunt, a young girl battling a rare genetic disease called Shwachman-Diamond Syndrome who performed her own original song earlier in the evening.

The gala was followed the next day by the 2012 Patient Advocacy Summit, a forum where patient advocates could discuss issues that directly affect them, from resources to policy. PatientsLikeMe Co-Founder and President Ben Heywood was featured on the Innovative Technologies and Platforms panel, sharing the stage with Dr. David Eckstein of the NIH’s National Center for Advancing Translational Sciences. Discussing the topic of “Accessing the Science,” they each gave an overview of how patient registries and clinical trials are promoting change and advancing medical research.

As a prime example, PatientsLikeMe joined forces with the Global Genes / RARE Project last year to create the RARE Open Registry Project, a resource for patients and families fighting rare and genetic diseases.  What makes it different from other registries is every time you enter data into the system, you receive information back showing how your data compares to others fighting similar diseases or taking similar therapies.  If your family is impacted by a rare or genetic disease, we invite you to join the registry today. 

With more than 500 attendees from 36 countries, the 5th Annual Medicine 2.0 World Congress took place September 15-16th at Harvard Medical School here in Boston.  Among these attendees were several PatientsLikeMe leaders, including keynote speaker Jamie Heywood and conference presenters Sally Okun and Paul Wicks.

In an unusual twist, all three PatientsLikeMe speakers got to present back-to-back, starting with Co-Founder and Chairman Jamie Heywood’s opening keynote about how his brother Stephen’s experience with ALS shaped his understanding of basic concepts like health, well-being and disease.  He then shared how PatientsLikeMe was founded to help patients like Stephen record and share their symptom and treatment data in a way that is meaningful to them, other patients and researchers. “Human networks are connecting information and data in ways that have never before existed,” he told the crowd.

Next to speak was Dr. Paul Wicks, our Research & Development Director, who gave a presentation entitled “But Will It Scale?  Lessons in Growth from PatientsLikeMe.”  He discussed how PatientsLikeMe evolved from a data-sharing platform for patients with a single disease – ALS – to a general platform serving more than 160,000 patients with more than 1,300 health conditions and a myriad of symptoms.   Important lessons covered included streamlining the research processes, refining the medical ontology and adjusting the business model.

Finally, PatientsLikeMe Health Data Integrity Manager Sally Okun – whose talk was entitled “Patient Voices:  The Power of Shared Knowledge” – then looked at some of the challenges of turning individual stories into shared knowledge.  One of the biggest hurdles:  how do you capture the patient experience in clinical terms, given that patients don’t speak this way?  For example, instead of talking about a “gait disturbance,” patients might report that they are stumbling, limping, dragging a foot or “walking like a drunk.”  (In fact, Sally shared that PatientsLikeMe members have used 35 different terms for this one clinical concept.)

What was the reaction to this trio of talks?  Sally reports, “I think the juxtaposition of Jamie, Paul and me speaking was quite effective.  Our commitment to capturing and honoring the patient voice certainly resonated with the people I spoke with.” Another way to gauge the response – and certainly an apropos one given the conference’s focus on social media – is to examine the Twitter activity generated by these presentations. Here are a few of the 7,000+ (!) Tweets associated with the conference hashtag #med2 that gave shout outs to PatientsLikeMe:

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, Office Manager Alison Dutton, Research Scientist Timothy Vaughan, Biz Dev’er Arianne Graham, Product 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!

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.

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 Analyst, Outcomes Research Scientist and more at the moment.