Dr. Steve Feldman, MD, PhD, is Professor of Dermatology, Pathology & Public Health Sciences at the Wake Forest University School of Medicine. The author of more than 500 peer-reviewed medical articles, Dr. Feldman is well-known for his research studies focused on patients’ adherence to topical treatments as well as for founding www.DrScore.com, an online doctor rating and patient feedback website.
What does Dr. Feldman think about what we’re doing at PatientsLikeMe? And what’s his take on the current challenges for psoriasis patients, as well as the treatment advances that may be ahead? Find out that and much more in our interview.
1. As the founder of DrScore.com, tell us how rating doctors online can improve medical care.
Doctors want to give their patients great medical care. Online ratings can help by giving doctors the feedback they need to know—from patients’ perspectives—such as what the doctor is doing well and what the doctor can do to enhance the quality of care in their practice. www.DrScore.com was designed to help facilitate that feedback while also giving patients a better picture—more transparency—of the quality of care physicians provide, something that wasn’t nearly so easy to do in the pre-Internet era.
2. What do you think about PatientsLikeMe’s data-sharing platform and openness philosophy?
PatientsLikeMe does a truly wonderful job taking advantage of the capabilities of the Internet to permit data sharing among patients so they can learn from one another. Another extraordinary accomplishment has been to develop ways to combine that data in order to better understand diseases and the benefits and risks of the treatments for those diseases. Openness is a terrific attribute in this Internet age. I am very optimistic about medicine and health care providers and think there’s nothing to hide (and if there were something to hide, it ought to be exposed)!
3. You’ve done extensive research around treatment adherence. What are the considerations for patients?
Well, as the former Surgeon General put it, medicines don’t work if patients don’t take them. Taking medicine isn’t easy, unless it is a habit. And when a patient starts to use a new medicine, taking it isn’t a habit. Patients forget their medicine, they may be fearful of their medicine, there are just all sorts of reasons why patients don’t always take their medications. I think coming up with a plan, a system, for remembering is helpful. (I keep my own pills in a seven-day dispenser on the dinner table, which works great for me except when my family goes out to eat).
If patients are fearful, they should have an honest discussion with the doctor about it. One thing is certain: patients should be honest with their doctors about how they use their medicines. It does neither the patient nor the doctor any good for the patient to tell the doctor one thing but do something else. If a doctor does prescribe a medicine that the patient thinks is too costly or too risky, the patient should let their doctor know. The doctor wants to know and may be able to change things.
4. We have a growing psoriasis community. What challenges do psoriasis patients face?
Psoriasis has a huge impact on patients’ lives. It affects how patients perceive themselves, how other people perceive the person who has psoriasis, and, in many cases, how someone with psoriasis thinks they are perceived by others. The lesions aren’t just unsightly; they can be itchy and painful. The condition is caused by an overactive immune system, which can also result in arthritis and increased risk of cardiovascular disease and depression. There are good treatments, but the treatments have their downsides: they may be costly, inconvenient, messy, and risky. One of the biggest challenges is getting educated about all the potential options. It isn’t easy.
5. In our forum, patients have been discussing whether diet can affect psoriasis. What’s your take?
Well, I don’t know of any particular dietary issues that have been definitively shown to affect psoriasis one way or the other (except perhaps that starvation temporarily improves the disease, probably by inhibiting the immune system). But if a particular patient finds some particular dietary issue that makes their psoriasis worse (or better), they should eat accordingly. Some patients tell me beer and/or wine makes their disease worse or that avoiding gluten has helped. The PatientsLikeMe platform may be helpful in compiling the experiences of many people to see if these are issues for individuals or could truly help patients in general.
6. Any thoughts on what’s ahead in terms of psoriasis management and treatment advances?
As our understanding of the immune system improves, scientists at drug companies will be developing newer and perhaps better ways of controlling immune diseases, including psoriasis. As our health care system changes to become more cost conscious, there may be greater reliance on low cost treatments, like generic creams and ointments for people with mild disease and more use of phototherapy for people with more severe involvement. And with better data collection—like with PatientsLikeMe—we may develop a better understanding of what works, what doesn’t work, and what risks and benefits our treatments have.
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.
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.
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.
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.
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.
A native of Glasgow, Scotland, Graham Steel is a longtime “Guest Researcher Member” of PatientsLikeMe. Following the death of his brother Richard at the age of 33 from a rare condition known as variant Creutzfeldt-Jakob Disease (vCJD), Graham became involved in patient advocacy work, and most recently, in lobbying for open access to published scientific research. Find out how this active blogger and Tweeter developed a passion for data sharing in our interview below.
1. Tell us how you first got involved in patient advocacy work.
As per my PatientsLikeMe profile, this started in 2001. Two years after the loss of my only sibling to vCJD, I was approached by a UK organization called the Human BSE Foundation to act as their Vice-Chair. Quite a daunting task for a 33-year-old!! I was involved in that capacity until 2005. Over the years, my interests in science and information sharing to this day continue to diversify.
I’m a great believer in complete openness and transparency as anyone who knows me in real life or via the Internet knows. One of my key assets seems to be “connecting people,” something that I started doing at the age of four. I enjoy making new connections and this is made so much easier with the advent of the web.
2. You’ve been a member of PatientsLikeMe since 2007. What key changes have you seen the site go through in that time?
I am not 100% sure where I first found out about PatientsLikeMe but it was most probably via the main ALS TDI Forum. I’m not a “regular” PatientsLikeMe forum poster with only 197 posts since February 2007. Some key changes that spring to mind: the addition of a PatientsLikeMe blog was a great development. A couple of years ago, a “Share This” button was added to the blog making it much, much easier to share content via social networking sites, etc.
The PatientsLikeMe platform itself has expanded in many ways since 2007. At that time, if I recall correctly, ALS/MND was the only disease covered. Now, that has increased to >1,200 conditions, so that alone is a major development. New features get rolled out on a regular basis and they are accompanied with good and clear explanations. It’s also much easier to ‘drill down’ to/for specific content, and the site is generally simpler to navigate than back in 2007, IMHO.
3. You have recently campaigned for open access publishing. Why is this important to patients?
Yes, as of late 2006, I stumbled upon my first Open Access (OA) Manuscript, as it happened via Public Library of Science Pathogens. Up until that point, I had assumed that ALL Scientific, Technical & Medical (STM) content was locked up behind paywalls. As such, it was very enlightening to discover an alternative to traditional publishing. As matters stand though, only ~15% of Peer Reviewed STM Manuscripts are OA, and subscription-based publishing is still “the norm.” The reason that I became part of the OA Community was to use my networking skills to make more people aware of and involved in OA. OA itself however is just one cog (but a significant one) in the wheel of Open Science!!
Two key sections of that post that stood out for myself most were:
“In the past six years, we’ve found that more and more patients are trying to access research studies written about them, including studies where they were participants. In addition, they are increasingly capable of understanding them. Yet closed access is locking them out of better understanding their conditions and their choices.”
And…
“As a society, we need to recognize that our understanding of disease doesn’t belong to science. It belongs to the patients (who are also usually our funders, by the way), and we should exist only to serve them.”
4. What do you see as being critical for the future of patient advocacy?
The Internet, Open Data and The Semantic Web. In terms of the sharing of data from patients, PatientsLikeMe was the first platform (that I am aware of) that made it easy for patients to share their data online with others. Whilst this data is “open,” it is open to the PatientsLikeMe community (and selected others) but not open at large. As stated in June this year by Sir Paul Nurse, “the President of the Royal Society said there was a need to put safeguards in place to protect confidentiality.” Sir Paul said that in reality no data was “totally secure” and that doctors already relied on personal information for treatment. “If you want a complete guarantee of privacy you would have to diagnose and treat yourself,” he said. (Also, see the recent “Science as an open enterprise” report by The Royal Society).
“Wilbanks’ proposal is a medical commons, a way for people to gather this medical data and share it freely. People are neurotic about privacy and keeping control of their data. ‘Some of us like to share as control.’ And, he believes we live in an age where people agree with him. He mentions a study run at Vanderbilt University in Tennessee. ‘It’s not the most science-positive state in America,’ he says. ‘Only 5% wanted out. People like to share if given the opportunity and choice.’ And not using this data to understand health issues through mathematical analysis ‘is like having a giant set of power tools but leaving them not plugged in while using hand saws.’”
Have you heard about the petition launched to the White House asking for all federally funded research to be freely accessible over the Internet? We’ve signed it and here’s why…
Today, government-funded research (that’s research paid for with your tax dollars) is often something you can have access to in published scientific journals, but for a charge. The petition is a call to action for the current Administration to make this research open to anyone who wants to read it — study participants, other patients, researchers, healthcare providers, industry, students, or anyone at all.
Under the Administration’s new “We the People” policy, if the petition gets over 25,000 signatures within 30 days, the White House will issue a response. At the end of day two, there are already over 10,000 signatures! (Anyone can sign, even those internationally.) You can read more about this open access movement and see what others are saying with the twitter hashtag #OAMonday.
Simply put, we believe this campaign represents the power of Openness. At PatientsLikeMe we’ve long believed in the power of open access and take steps to ensure many of our publications such as our recent epilepsy user survey, our lithium study in Nature Biotechnology, and most of our other published research is all freely available without needing to be an academic researcher. Why? Because patients like you want to read the most up-to-date scientific research and we believe you have the right to do so without impediment.
“In the UK, there’s a saying that e-patients have about their healthcare decisions: ‘Nothing about me, without me.’ There’s no better example of the disconnect between academic medicine and patients than a research study *about* patients that they can not read.”
- Paul Wicks, PhD, R&D Director, PatientsLikeMe (Signature #817)
“We call on patients, caregivers, family, and friends to sign this petition and send a clear message that life-saving research paid for with tax dollars is a public good and should be shared in the same spirit with which altruistic patients like you sacrificed their time, wellbeing, and sometimes even their lives.”
- Ben Heywood, President and Co-founder, PatientsLikeMe (Signature #4473)
“Some issues transcend politics and this is one of those. When you are sitting in a hospital trying to make a decision about yourself or a loved one, we believe you should not have to pay to access government-funded research results that could help you. Science is not done for universities or for scientists; it is done to better our understanding of medicine and disease to help you the patient. This research belongs to the public, to the patients who made it happen by volunteering and funding it with their tax dollars.”
What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our April edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up to recently, and if you are member who’s not opted in to the newsletter, sign up today.
MONTHLY MUSINGS
What’s with sharing, anyways?
We’ve said it before, and we’ll say it again – we believe in the power of openness. By sharing your experiences, healthcare can be changed for the better. You can monitor your health status and make changes accordingly; you can find out you’re not alone; and both patients and organizations can do research based on your real-world experiences.
Every single patient on our site contributes to this change. When you add conditions, treatments and symptoms, you’re entering data that enables others to learn from you. The way we see it, when everyone shares, everyone benefits. To see how, check out these reports and dig deeper into the individual stories and data.
Treatment Reports Things you can learn: How is this treatment working for other patients? What side effects have they reported? What are the most common dosages?
Symptom Reports Things you can learn: How many other patients have experienced this symptom? What are they taking to treat or manage it? How severe is it for them?
Condition Reports Things you can learn: Who else has this disease? When did they experience their first symptom? What are some of the most common treatments?
Thanks for everything that you’ve shared – and continue to share – at PatientsLikeMe. Here’s to all that will be learned in 2012 as a result!
Everyone has one. Tell yours in our new open text box (shown below). Anyone who follows you will then see your story in their feed. Stories are also important part of your health journal. Have you used the new journal feature? Adding a story (and photo!) about any of your conditions is a great way to get started.
What’s a rare disease, you ask? It’s a condition that affects less than 200,000 people in the US – or less than 1 in 2,000 people in Europe. There are more than 7,000 such disorders (80% of which have identified genetic origins), and collectively, they affect an estimated 350 million people worldwide. Yet because of the lower prevalence of the individual diseases, they often receive little attention.
The 2012 Rare Disease Day theme is “Solidarity,” highlighting the importance of collaboration and support among patients with rare diseases. Despite the wide variability of symptoms, patients with rare diseases face many of the same challenges, which may include a difficult diagnosis process, isolation, high cost drugs (if they exist), lack of information and inequities in the availability of treatment and care.
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 have profiled Research Scientist Mike Massagli and User Experience Engineer Cris Necochea, and today, we share our interview with Research Assistant Shivani Bhargava. Unlike Mike and Cris, who are both company veterans, Shivani offers the perspective of a more recent hire. Find out what it’s been like for her to jump in and start her career with our team.
1. What convinced you to join PatientsLikeMe?
I was recruited right out of undergrad in the Spring of 2010. I was just beginning my job search and a previous employer pointed me to this fantastic startup in Cambridge, MA. It took five…maybe ten minutes to fall completely in love with the website and realize I wanted to help contribute. I really liked the idea of a completely unique healthcare company that was using a creative business model to actually improve healthcare by putting the patient voice first. After two interviews, in which I’m almost positive Paul Wicks and Sally Okun took pity on my bumbling college student enthusiasm, I started working for PatientsLikeMe!
2. Tell us what it’s like to be part of the Data Operations Team.
Health Data Integrity is the name of the game. And that’s exactly what we do. We make sure that patient data is entered accurately and according to the intentions of the patients themselves. Things have sure gotten more interesting since the expansion of the site to include every condition, but it’s been an educational and enriching process. It’s normal to find us simultaneously working with a diverse number of patients and various medical ontologies and online resources to carefully map the patient vocabulary against an existing clinical one.
It’s also humbling to work with such a qualified team. Between PharmD’s and RN’s, we’ve got degrees and years of experience galore. In fact, I’m the only one with just a mere BA! Everyone on my team continues to amaze me daily with their expertise and ability to work through tough problems. If you put all our heads together, we’re pretty much an unstoppable force at PatientsLikeMe.
3. What research projects are you working on at the moment?
One of the big things we’re working on as a team is trying to build a medical framework using patient-reported data. Since one of our goals is to map a patient vocabulary, we’re trying to infuse the mountains of enormous data that our users provide with structure and organization, similar to existing medical ontologies. The potential benefits of this would be endless. Overall, it would help research and patient empowerment, and it would allow clinicians to better understand the patient experience.
Of course, it’s not an easy task. Imagine trying to invent an entire language with rules, categories and syntax with just a tiny, yet brilliant team! Okay, well, maybe it’s not quite like that. We do, after all, have the help of an online information revolution where we can easily access clinical resources. Also, we have at our disposal the insightful and diverse patient community at PatientsLikeMe. And because of that, it’s a challenging project that continues to be dynamic and make progress. Look out healthcare systems!
And that is ultimately why I love working at PatientsLikeMe. We’re really out to change the face of the healthcare system and maybe not just here in the states, but internationally too!
4. How would you describe the PatientsLikeMe work culture?
Well, between free lunches during Journal Club on Fridays [where a different speaker talks to the entire team each week], ping pong breaks in the afternoons and the LEGO station in the engineering pit, it’s hard work. Clearly not meant for the stiff, traditionally-minded laborer at heart.
Kidding aside, the startup environment and more specifically the PatientsLikeMe atmosphere makes working here not at all like work. It’s normal to have impromptu discussions or meetings about new ideas or problem-solving strategies. People are productive here. You are constantly working on new projects, new goals and new aspects of the site, which makes sense given the constantly evolving nature of the website. Everyone brings valuable perspective to the table and together we’re building something that all of us believe in as a cause.
That’s the biggest thing. We’re not a non-profit or a charity organization. We’re a business…with a rather noble and innovative product. And that really lies at the crux of our amazing work culture.
Last November, we shared our takeaways from TEDx Cambridge, a one-day event featuring 30+ speakers and lots of Ideas Worth Spreading (TED’s mission). The theme for this particular gathering was “Thrive.” How can we as individuals – and communities – not just survive but thrive?
One of the speakers to take a crack at that question was PatientsLikeMe Co-Founder and President Ben Heywood, who talked about the story behind PatientsLikeMe. In addition to sharing how it all began with his brother Stephen’s diagnosis with ALS, and what PatientsLikeMe is trying to do (“a revolution of openness”), Ben focused on how we can thrive as a company against big expectations – both external and internal.
Tune in to the video below to find out just that. Congrats to Ben on an inspiring talk – not to mention his standing ovation!
I love the conveniences that come from having my data moved around online (with my permission, of course). For example, TurboTax will pull all my information from my investment bank and the IRS, and then calculate how much I owe. With me doing hardly anything, I’m done in about 20 minutes! Similarly, Mint.com can pull in my bank and credit card transactions to scold me about how much I’m over-spending on Amazon and restaurants.
Sadly, my healthcare data is not nearly as portable or accessible as my financial data. It’s a shame, because there are many talented people in health start-ups who want to build tools to help people make sense of their health data. It’s been 15 years since HIPAA was passed to promote this accessibility and portability of data, but many obstacles have gotten in the way of implementation: debates about data standards, the cost of updating information systems, debates about whether patients should really own their data and more.
This is exactly why the U.S. Department of Veterans Affairs (VA) should be commended. The VA cut through these obstacles and implemented data download for all the veterans using their “My HealtheVet” online health services portal. With the click of a single button, users can now download appointment information, medication histories, lab results and more. To date, nearly a half million veterans have already downloaded their data. What’s more, the VA is encouraging other health providers to follow their lead: they would love to see every health portal have a big, blue button that allows users to download their data with a single click. They are calling this the “Blue Button” initiative.
Blue Button is an ambitious undertaking, and we’re just beginning to understand its potential. However, Blue Button doesn’t necessarily make it easier for a patient to move data to other services. In fact, there are no data formatting standards for Blue Button, a decision meant to motivate providers to participate because they wouldn’t get bogged down in an argument about which standard is best (for example, Continuity of Care Document (CCD) vs. Continuity of Care Record (CCR).) This lack of standardized data output means it will be more work for any third-party services that want to import it.
Moreover, the VA’s implementation of Blue Button for My HealtheVet poses some additional challenges for data portability. The sample data export from My HealtheVet is just a free-text file with very little structure to it. While it is easily read by humans, it is not in a format that can easily be parsed by computer programs, such as XML or comma-separated-value (CSV) files.
To help facilitate the portability of the VA’s Blue Button download data, PatientsLikeMe is releasing an open-source Blue Button parser, which translates the free-text data file into structured data. Our goal is to make it easier for programmers to use this data for their own applications, or even for building tools to translate the data into a more established health data standard like CCD or CCR. Because the parser is open-source, it is not only free, but improvements made by any developers can be contributed back so that others may benefit. We believe sharing is a good thing.
There actually have been a couple prior attempts at parsing the My HealtheVet records to date. One person made a great start at an online tool for parsing My HealtheVet files. Also, Microsoft’s HealthVault service will read Blue Button VA files, but, as far as we can tell, the parser they use for this is not available as open source yet.
The lack of a defined data format “standard” for BlueButton frees us from endless debating over nuances of one standard versus another, but at the cost of data portability. PatientsLikeMe believes Blue Button can be even more powerful if patients have more options for what they can do with that data. By releasing a standard open-source parser, PatientsLikeMe hopes to give providers and other services a way to participate in Blue Button without worrying about the lack of definition.
What does this mean for patients? Hopefully we’re a little bit closer to all having a Mint.com for our health.
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. Last month, we featured an interview with Research Scientist Mike Massagli, PhD, and today, we share our interview with User Experience Engineer Cris Necochea, who holds the distinction of being the very first PatientsLikeMe employee. Find out what convinced him to join PatientsLikeMe as a fledgling start-up…and why he’s stayed for the long haul.
1. You’re a User Experience Engineer at PatientsLikeMe. Tell us what that involves.
At PatientsLikeMe, we use a methodology called Agile Scrum, where our focus is on the quick turnaround of short, attainable goals, usually in a two-week period. It’s fast-paced and never boring. Our engineering team is made up of around 10 Engineers, a Product Manager, a Designer and two User Experience Engineers, all under the direction of our Director of Engineering, Steve Hammond.
My focus is on translating the visual designs into a usable and accessible user interface. However, at PatientsLikeMe, we all have a lot of shared responsibility for driving the direction we take with the user experience. Given our short cycles of releasing website updates every two weeks, it’s invaluable to have every member of our team focused on what is most important for the patient. We don’t always get it right the first time, but we take the feedback we get from our members to constantly improve the user experience.
2. What kind of projects are you working on right now?
Currently, we’re wrapping up a long project that will allow our members to describe more about their health experience in the context of the information they already share. We have been testing this for a while with patient volunteers, and the feedback we have received is very positive. We believe it will encourage even more sharing, which, in turn, will build the body of medical knowledge. That’s our ultimate goal.
Aside from that, I’m working on some features to improve the accessibility of the website. Based on feedback of a patient who uses assistive technology (AT), we’re trying to cut down the number of steps to access the essential features on our pages.
3. What do you like best about being a part of the PatientsLikeMe team?
Our team environment, like our entire company culture, is highly collaborative and based around lots of direct communication. Our weekly Journal Club presentations with outside speakers are a highlight, but we also have regular company presentations on what we’re working on, as well as informal “brown-bag” presentations on technical subjects and the like. Sharing is a focus even for the employees at PatientsLikeMe. It helps that the people we have are the smartest I have ever worked with, and they are passionate about the company’s mission.
On a more personal note, our team keeps it witty and light-hearted. It’s always fun to be in the office, but even on days when we work remotely, the laughs keep rolling over our team collaboration tools. As an aside, I’d like to point out that PatientsLikeMe is hiring. If you enjoy working with hilarious and talented folks that are trying to help people, maybe you’d like to look at our Careers page.
4. As someone who’s been with the company since the early days, what’s the PatientsLikeMe milestone that you’re most proud of?
That’s a very interesting question. I think being the very first employee at PatientsLikeMe is what I’m most proud of. When I received the call from Co-Founders Jeff Cole and Ben and Jamie Heywood about what they were putting together, I had little hesitation about joining an effort that was aimed at helping improve the lives of patients.
Through that time, we have contributed legitimate scientific discoveries and built a team of people who excel in their fields in the service of a mission that is bigger than any one of us. I couldn’t have predicted that we would succeed when I started here in 2005, but I believed enough in the goals of PatientsLikeMe to make the leap. Seeing what we have accomplished in that time is the most gratifying thing of all.
This weekend, MIT is hosting the first H@cking Medicine conference and PatientsLikeMe is proud to be a sponsor. The hacking encouraged here isn’t malicious, rather, it refers to a passionate subculture of computer programmers who believe in sharing, openness, and innovation (among other things). Those are three concepts near and dear to us here at PatientsLikeMe.
The goal of the conference is to inspire new ideas and create new relationships so that everyone will leave invigorated and excited about improving healthcare. According to the H@cking Medicine website, “By using available tools in unconventional ways, we aim to revolutionize delivery of care, empower patients, and design new models of care. Typically, healthcare innovation is painfully slow and, even worse, often increases the cost. We can make a difference by creating cost-effective solutions without waiting for fundamental advances in science.”
To kick off the event on the first day, our own Jamie Heywood (keynote) as well as other leaders in the health care field will inspire audience members with ways to find and learn from the best use of openly shared data. The second day is dedicated to team hacking, and gives coders a practical look at what can be done with the available resources.
Read more about this subculture of hackers on Wikipedia and follow the H@cking Medicine conference updates on their website and Twitter.
“I got this call from my brother Stephen, and he said the news doesn’t look good.At that point, he’d been through enough processes to know what that meant – he had ALS.So I began this journey with my brother and my family…. We were thinking there had to be a way to make this about the patient.But it started like everyone else. You get that phone call, and your life changes.” – Jamie Heywood, Co-Founder
Recently, we launched a new and improved About Us page that included a short video about our company history.Now, we’re pleased to unveil a longer, more in-depth video that allows you to hear our founding story from four PatientsLikeMe executives and learn what drew each of them to become a part of our groundbreaking concept.
Tune in below to hear where it all started and why, five years later, we’re committed to continuing the journey we’re all on – as a company, as patients and as family members of those affected by disease.
You can also watch this insightful piece (~15 minutes) in three smaller segments: Chapter 1, Chapter 2 and Chapter 3.
At PatientsLikeMe, people with every type of condition are coming together to share their health experiences, find patients like them and learn how to take control of their health. The result is improved care for patients as well as an acceleration of real-world medical research.
Stay tuned to our blog for the latest happenings with our company, our patients and our mission of opening up the healthcare system.
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This weekend, MIT is hosting the first 