9 posts tagged “life”

PatientsLikeMe Appoints Ed Godber as First Executive Vice President of Life Sciences Ventures

Posted March 10th, 2015 by

Industry Leader to Head up Patient-Focused Initiatives for Life Sciences Customers

CAMBRIDGE, MA., March 10, 2015— PatientsLikeMe today announced it has appointed Ed Godber as Executive Vice President of Life Sciences Ventures. In this newly created position, Ed is responsible for managing PatientsLikeMe’s life sciences business and bringing the patient agenda to the forefront of partners’ development and delivery operations. He reports directly to PatientsLikeMe CEO Martin Coulter.

“Our pharma, biotech and healthcare customers are asking us to guide and support their transition to a more patient-centric world, and to integrate the patient voice in all they do,” said Coulter. “Ed brings the perfect blend of skills to this mission. His patient-centered view and senior level industry, payer and healthcare experience will help our customers create even greater value for their patients.”

Ed has been advising and managing operations in numerous life sciences and healthcare companies for more than 20 years. Previously, he was the Chief Executive Officer of the London-based Health Labs Advisory Boards, where he was a strategic advisor to pharma, biotech, venture capital and nonprofit organizations. He also spent nearly five years at GlaxoSmithKline (GSK) as Senior Vice President, heading up access to medicines as part of the European Executive Team and exploring evidence innovation within the research and development division. In that position, he also co-founded a multi-million dollar external scientific collaboration on real world data.

Godber began his career in public health, strategic commissioning and policy research in the UK’s National Health Service (NHS) and has advised a wide range of transformational ventures, including the Bill & Melinda Gates Foundation and the Chatham House Working Group on Anti-Bacterial Resistance.

“I’ve long admired PatientsLikeMe for sparking a revolution in healthcare with its community- and science-based platform for patients,” Godber said. “As a patient who has benefitted so much from the way in which PatientsLikeMe works, I’m excited and honored to be part of a team that is helping life science companies realize their deep-seated desire to enable the patient voice to transform the discovery and development process.”

Godber is based in London. He holds a master’s degree in health economics from the University of York and a master’s degree in business administration from the London Business School.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 300,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 50 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.


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).

Share this post on Twitter and help spread the word.


Recognizing National Donor Day

Posted February 14th, 2015 by

It’s Valentine’s Day, and besides flowers and candy, there’s a special way you can show somebody love today – by registering as an organ donor to give the most precious Valentine of all: the promise of life.

February 14th is also National Donor Day, and it’s all about recognizing those who have donated in the past and celebrating the lives of people who have thrived after receiving a transplant. To help, the U.S. Department of Health and Human Services has organized an awareness campaign including educational videos, stories of survivors and ways to participate today. If you haven’t already, search your state for an organ and tissue registry and learn how to become a donor. And don’t forget to share on social media using the #NationalDonorDay hashtag.

If you’ve received an organ donation – or are waiting for one – you can reach out to the transplant community at PatientsLikeMe and connect with members who have received heartkidneyliverlung or pancreas transplants, among many other types. You can also check out the extensive PatientVoice report on what life is like after a transplant and read about how PatientsLikeMe member Lori survived her lung condition through a lung transplant.

Share this post on Twitter and help spread the word for National Donor Day.


“Strength will come, somehow, from somewhere” – PatientsLikeMe member Glow4life shares her journey with lung cancer

Posted January 26th, 2015 by

PatientsLikeMe member Glow4life was diagnosed with lung cancer (adenocarcinoma) this past June, and her story is a testament to never losing hope. She recently shared her experiences in an interview, and she spared no details in describing her challenges. Despite her terminal diagnosis, four rounds of chemotherapy and the sudden loss of her husband, Glow4life has remained positive, and she’s learned to take every day as it comes and live in the moment. Learn about her journey below and how she shares love and hope whenever she can.

How did you react after getting diagnosed with lung cancer in 2013? What was the diagnosis process like?

I had a routine X-ray in February 2013, after attending A & E with chest pains (which turned out to be nothing). A few days later I received a letter asking me to return in 6 weeks for a follow up X-ray, as there was a suspect area, probably scarring from a previous chest infection but best to check. My general practitioner reassured me it was unlikely to be sinister, if cancer was suspected I’d be looked into immediately. I thought no more about it and returned for the repeat X-ray as scheduled. The following day my GP rang me to tell me there was a tumor on my left lung that required further investigation, and gave me the number to ring for a scan, which took place within a couple of weeks. I asked if this was likely to be cancer, and he told me it almost certainly was. The scan did, in fact, reveal a cancerous tumor, and I was referred for a PET scan and bronchoscopy. On the 27th of June, I was seen by the specialist who gave me the news that adenocarcinoma was confirmed, and had spread to the other lung, and right adrenal gland, and was given an appointment with an oncologist, who would assess appropriate chemotherapy. It’s impossible to describe how this feels, but you know that your life has changed forever. I saw the oncologist on the 7th of July and was offered a course of cisplatin/premetrexed, a course of 4 to 6 treatments, every three weeks, in an attempt to shrink the tumors and prolong life.

I was told my prognosis was terminal, and that with successful chemo, 20 percent of patients survive a maximum of 12 months. If we were shocked before, nothing compared with this, it was like being hit by a wrecking ball. I started my chemo on the 23rd of July and had the fourth session in October, which was followed by a CT scan. This showed that the tumors had shrunk and no further chemo was necessary. A maintenance course of premetrexed was available but not recommended, as the chemo had made me very ill. Since then I have been on watch and wait, every three months, last time extended to four. I go for X-ray and blood tests before my appointment with Dr. Brown, my oncologist. My cancer is stable, though not cured, and my general health is good, as is my quality of life. I do tire very quickly, but then I’m getting on a bit!

You’ve received treatment for your tumors – what’s it like being on a “watch and wait” plan?

Being on ‘watch and wait’ is like having the sword of Damocles hanging over your head, you never know when it might drop. But I try not to dwell on that, it would be wasting the extra time I have been given in pointless worry and speculation. I try to forget about it between visits, and for the most part I do, though I must admit to a certain amount of anxiety in the couple of weeks prior to the next appointment.

How has your day-to-day life changed since being diagnosed and treated for lung cancer? 

Well, I thought the worst possible thing had happened to me and things couldn’t possibly get worse. But I was about to find out different. It’s hard for me to answer this objectively, as 3 months after the diagnosis, and while I was in hospital having my 2nd chemo, my husband Tim was found dead at home, having suffered a cerebral occlusion. Tim was 11 years younger than me, and in perfect health, so the shock was profound, for all of us. I passed the next few months in a fog of chemo and grief, it was the hardest time imaginable, but the days passed and I got through it.

My life has changed beyond all description and I can say with all honesty that living without Tim is much harder than living with cancer. Loneliness is my biggest issue now, and wishing he was here to help me through this, which I know he would wish he was here to do. One thing I did learn was that having a terminal illness doesn’t make us closer to death than anyone else, and that life can be taken from any of us, at any time. So it’s important to take each day as it comes, and make each one count. When I die, nothing will be left unsaid, no actions regretted or opportunities missed.

I fear death much less than I did, while still embracing what life is left to me. We all have a time to leave this world and move on to whatever adventure lies beyond, and I know that the time is coming when Tim and I will be reunited in spirit. I will be sad to leave my beautiful family, but happy that I’ve been given this time in which we’ve all been able to prepare, and make the very most of the chance to let them know how much I love them. And we all have to leave sometime!

What have you learned from using the InstantMe feature on PatientsLikeMe?

What I’ve learned from PatientsLikeMe is that I’m not alone in this, so many of us are dealing with similar issues, and that while cancer is different to each individual, what is the same is that most of us are devastated by the effect it has on our loved ones. It’s so hard to see their sorrow, and know you are the cause and can do nothing to stop it. I’ve also learned that many people are much worse off than I am, having succumbed so much faster, while I am still here and comparatively well. Each time I go for a scan/bloods/chemo, or to oncology I see the waiting room full, and think, so many of us, all with similar fears and trepidation of what is coming our way.

We read that your motto is “Never give up, never give in” – along with that, what else would you say to someone who has been recently diagnosed with lung cancer?

What I would say to anyone recently diagnosed is this: You will wonder how you are ever going to find the strength to cope, how do people do it? But be assured that the strength will come, somehow, from somewhere, and you’ll find your way through. Take one day at a time, and make each one count. Prepare for every eventuality, but never lose hope. Follow good advice, not fads. Try not to look too far ahead and live in the day, or even the moment. Don’t think of yourself as dying from cancer, but as living with it. One of Tim’s favorite sayings, when the times were tough, was “Head up, son” I say that to myself every day.

And don’t Google! You’ll frighten yourself with out-of-date misinformation and meaningless statistics. Listen to the experts.

Finally, share love and hope wherever you can, while you can.

Share this post on Twitter and help spread the word for lung cancer.


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

Posted January 6th, 2015 by

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

 

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

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

 

What’s next for open science?

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

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

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

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

Helping spread the word

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

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

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

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

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

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

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

Why do you think the prize model is so important?

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

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

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

Why do you work so hard?

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

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

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

…and that ALS patients can love and be loved.

How do you see open science evolving in the future?

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

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

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

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


“I just kind of went on with life.” – PatientsLikeMe member Fred shares his experiences with MS

Posted November 19th, 2014 by

We’ve interviewed a lot of members on the blog over the years, and each has a different perspective on life with MS. Fred1118 has taken sharing about his life with MS to a whole new level, documenting his life in a personal photoblog and posting the pictures with the world online. Fred shared all about his experiences in a recent interview, everything from his handicap-accessible house to how physical therapy helps him stay mobile. Read his story below.

What went through your mind when you were diagnosed with RRMS back in 1994?

I didn’t really know too much about MS at the time. I’m not sure if I had even heard of it, so didn’t know what to think. The diagnosing neurologist said, “you have a mild case of MS.” I was young and carefree at the time and didn’t really worry about it too much. I kind of just went on with life.

It looks like you’ve done a lot of work on your house to make it handicap accessible. What are some tips and tricks you can share with the community?

I would say that everyone’s needs are different. It’s a good idea to have an occupational therapist that is experienced in doing home safety and accessibility evaluations come work with you in your home to see what your abilities and limitations are so he or she can make proper recommendations. I advise that people not wait until modifications are absolutely necessary before making them. I’ve been guilty of that in many regards, including waiting too long to get a power wheelchair. I should have gotten one sooner. It would have expanded my ability to go places and do things.

We saw some pictures on your photoblog of you in physical therapy – is that a daily routine? How does it help you manage your symptoms?

I was getting in home PT 3 days a week for a few months after suffering a seizure that prevented me from driving for several months. The PT is of course not a cure for MS, but it does provide exercises and strength training options that can help you maintain some abilities. When you’re sitting in a wheelchair all day, I think you can lose some function not just from the MS, but also from being sedentary, so it’s important to exercise.

Can you tell us about your daily meal set-up? 

I have a pretty simple daily meal routine. I often eat the same things day after day. For breakfast I eat some yogurt, a multigrain type bar and a banana. That rarely changes. Lunch is almost always a sandwich (some kind of meat and cheese along with some mayo) and a piece of fruit, maybe an apple, pear or peach. Dinner varies a little. A friend who lives here with me often makes a pretty bountiful garden salad that includes lettuce, spinach, beets, carrots, broccoli, cauliflower and more. Sounds good huh! In addition I’ll eat something else like canned soup, a bowl of cereal, maybe a pre-made Indian dinner that I like. Almost all meals are eaten on my wheelchair tray.

Your photoblog takes viewers through a day in your life – what inspired you to give back to others and raise awareness for MS?

I’ve been a long time volunteer with both the National MS Society and the Myelin Repair Foundation. I had never really done much volunteer work prior to my MS diagnosis. After I stopped working full time I didn’t really do much of anything productive with my time. It was actually a girlfriend who suggested contacting the MS Society to see if they had volunteer work I could do. They did, and I caught the volunteerism bug. I would recommend it to anyone. I often say that doing volunteer work is as beneficial and rewarding to the volunteer as it hopefully is to the people you’re volunteering to help.

Not everyone is as open about their personal experiences living with MS as you. What was it like working with the photographer and putting yourself out there?

I guess I’m kind of an open guy. After meeting Ted (the photographer) I felt comfortable with him and trusted him. I decided pretty much right away that I was going to be all in on this project. I figured if you’re going to do something, do it right. We hoped to have an impact with the photo essay, and only being half in so to speak wouldn’t do the job. I didn’t really do anything other than let someone take pictures of me doing things I normally do. I know Ted was amazed at how open I was. I didn’t really feel like I was doing anything all that amazing.

Photos courtesy of TGoldmanPhotography.com

Share this post on Twitter and help spread the word for MS.


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.


PatientsLikeMe in real life: reporting back from the PFF Summit

Posted January 6th, 2014 by

Dave, Rishi, and I spent a few days last month in sunny La Jolla, California – site of the biennial PFF Summit. Well, La Jolla is usually sunny… this year it was unseasonably cold and rainy! Nevertheless, not even the nasty weather could dampen the enthusiasm of more than 500 clinicians, researchers and (most importantly!) patients and caregivers who turned out from all over the world to meet up and share the latest research on pulmonary fibrosis.

The PFF Summit was hosted by the Pulmonary Fibrosis Foundation (PFF), who we met a few months after announcing the launch of the PatientsLikeMe IPF Community. We were very enthusiastic to help support the PFF’s work by sponsoring and contributing to the research exhibition at the summit. While I spoke with patients, caregivers and clinicians about our open patient registry and the history of PatientsLikeMe, Dave and Rishi learned about the latest advances in PF research and shared our study of the impact of PF on patients’ sleep. If you haven’t heard about it yet, here’s what we learned about PF patients and sleep:

  • A total of 66 IPF patients reported having or possibly having sleeping problems, and 47% of these had sleeping problems between 1 and 5 years.
  • Over half of our IPF members said that their sleeping problems were moderate, severe or very severe, and that their sleeping problems had affected their quality of life in the past 4 weeks.
  • IPF patients that have had sleep problems for a long time tended to report a lower quality of life.

Dave in front of the PatientsLikeMe poster with the findings from our study of PF and sleep.

There were many moments that both inspired and enriched our time at the Summit. Some highlights include:

  • Hearing patients say, “I’ve heard of you!” or “I just joined the community!” Welcome and thank you!
  • Watching patients engage with the science and ask thoughtful, tough questions of the medical experts in their field
  • Chatting with the caregiver of a newly diagnosed patient about how much support she had gained from connecting with other patients and caregivers through their local support group
  • The PFF’s announcement of plans to build a clinical registry and care center network with leading PF researchers and their institutions beginning in 2015

Rishi at the PatientsLikeMe booth.

We had a lot of fun and learned even more, but we came home knowing there is still much to be done back here in Cambridge on behalf of all patients. We continue to be proud contributors to patient-centered research that advances medicine. On a personal note, I am profoundly grateful to all our members, for your continued openness and the courage with which you continue to share your story. It is always a pleasure to meet you in real life. You’re the reason every person on the PatientsLikeMe team comes to work every morning, and why we continue to believe that it’s you – the patient – that will change healthcare for the better.

PatientsLikeMe member ArianneGraham


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.