The beginning of a new year is always a time for reflection.  You look back, you look ahead and you try to find the big picture.   For patients living with chronic health conditions, a new year can be an opportunity to implement and share lessons learned along the way – about how to cope, manage symptoms, find support, maintain perspective and much more.

Here are a few pieces of advice from members of our Mental Health and Behavior Community in response to the thought-provoking question, “What do you wish you could tell yourself 10 years ago?”

• Guilt drains your energy and doesn’t accomplish anything. Let it go.
• Take your meds as prescribed for your sake – and your family’s.
• Don’t like your provider? Trust your instincts and find a good one.
• Just taking a shower or going on a walk can make you feel better.
• Pick up the phone. Only you can break the cycle of self-isolating.
• Things can get better with the right treatments and care team.
• Get help if you’re self-medicating with alcohol, drugs or self-harm.
• Remember, you’re not crazy or lazy – you have a chronic disease.
• If you’re unable to keep working, apply for disability right away.
• Be kind and patient with yourself because life is hard enough as is.

Is there something you wish you’d known earlier? Chime in on the discussion or share your thoughts in the comments section. Here’s to getting a little wiser in 2013!

How serious is the U.S. Department of Health and Human Services’ Office of the National Coordinator for Health Information Technology (ONC) about increasing patient safety?   So serious that they are running a contest challenging the best and brightest developers to create a platform that makes it easier to report a patient safety event electronically.

The Reporting Patient Safety Events Challenge is offering $70,000 worth of prizes, with $50,000 (and a demo opportunity) awarded to the first place winner, $15,000 to the second place winner and $5,000 to third place winner.  The submission deadline is August 31, 2012.  Learn more about the contest guidelines and 30+ participating developer teams here.

“Ideally, we would live in a world of optimal care delivery,” says the ONC.  “Physicians, nurses and care delivery organizations across the country are continuously working to minimize and eliminate errors.  But, until this ideal world exists, we need to invest in infrastructure that helps enable better care quality, risk management and shared learning – all to ensure better care for patients.”

PatientsLikeMe fully supports this goal, which is why we introduced our first-of-its-kind adverse event reporting platform in 2009.  As part of a two-year pilot program, our members with multiple sclerosis (MS) were able to submit adverse events related to a medication, medical product or medical device directly to the U.S. Food and Drug Administration’s MedWatch program through PatientsLikeMe.  Our system automatically pulled relevant data from the patient’s profile into a FDA 3500 form, dramatically reducing completion time.

Since then, we’ve also developed an integrated and comprehensive drug safety reporting platform that monitors patient data for potential adverse events when we are collaborating with a sponsoring partner in designated disease areas. These data are then clinically triaged and curated using the Medical Dictionary for Regulatory Activities (MedDRA), an industry standard terminology. Adverse events are submitted to our partners electronically in FDA 3500A format to meet regulatory timelines and reporting criteria.  Of note, PatientsLikeMe is the only online health data platform in social media that has successfully passed multiple drug safety audits conducted by our partners’ pharmacovigilance and drug safety experts.

What’s the difference between patient safety and drug safety?  And what do we see ahead in this critical area of healthcare?  Tune in to a podcast with PatientsLikeMe Chairman and Co-Founder Jamie Heywood on this very topic.

What’s it like to work at PatientsLikeMe?  We are continuing to reveal just that with our monthly blog series “A Day in the Life,” which features employees from different departments.  So far, we’ve interviewed User Experience Engineer Cris Necochea, Research Assistant Shivani Bhargava and Office Manager Alison Dutton.  Today we hear from Research Scientist Timothy Vaughan, who earned his PhD in physics before deciding to focus his simulation and modeling skills on medical questions.

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

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

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

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

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

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

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

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

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

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

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

“I think we can see there are a lot of ways where openness can be powerful.  What’s necessary is to help facilitate openness and reduce the barriers to sharing medical information.” – Ben Heywood

PatientsLikeMe Co-Founder Ben Heywood has blogged previously about openness and sharing – and how important they are for patients. In this edition of PatientsLikeMeOnCall, he talks about the progress we’ve made in achieving openness within the healthcare industry and his vision for the expansion of the patient voice.

How can we put patients back at the center of healthcare? What barriers do we need to break through so that patients like you can openly share your health information?  Ben answers these questions and more in the fourth and final episode of our “A Look Ahead” podcast series.

Tune in to Ben’s full interview here:

Did you miss any of the first three episodes?  Find them on our blog or iTunes page.

“What are the things that affect a patient’s safety? It’s everything – it’s not just whether the drug is good or bad, it’s the whole process.” –Jamie Heywood

Why does the healthcare industry need to shift from drug safety to patient safety? PatientsLikeMe Co-Founder and Chairman Jamie Heywood explains his view in this week’s edition of our podcast series entitled “A Look Ahead.”

No stranger to this topic, Jamie has written about patient safety on our blog before.  ”By using structured data collection tools within the PatientsLikeMe platform, overseen by a drug safety professional, industry partners can improve patient safety,” he wrote.

In this edition of PatientsLikeMeOnCall^TM, Jamie discusses the difference between drug safety and patient safety, why it is so important for the healthcare system to adapt more to patient safety and what this shift would mean for the future of healthcare.  He also makes the case for why pharmaceutical manufacturers need to follow up on any drug safety events when a new treatment has been developed.

To hear more, listen to Jamie’s full interview:

“Social media is the canvas on which patients can really paint the entire picture of the experience they’re having with their disease and how it impacts their lives.” - David Williams

Why is it so important for patients and industry to work together?  Chief Marketing Officer and Head of Business Development David Williams tells us just that in this week’s installment of “A Look Ahead.”  We sat down to discuss the benefits of aligning patient and industry interests as well as the role that social media can play.

Among other win-win results, David shared that this alignment of interests can produce:

• Faster development of treatments and services
• Products that impact a patient’s quality of life, not just clinical outcomes
• Greater patient influence and input on industry decisions

We also talked about how social media has become a key method of interaction, allowing pharmaceutical and other healthcare companies to better understand the functional impact of a disease on everything from mental productivity to the ability to stay employed.  Patients like you discuss issues like these online every day, and if the industry is paying attention, it can lead to richer data and improved services.

What successes has PatientsLikeMe had in bringing patients and industry together?  And what kind of possibilities do we see ahead?  Tune in to David’s full interview here:

Thanks for stopping by and listening to the second podcast in the “A Look Ahead” series. Next Friday, April 1, 2011, we will be talking with Co-Founder and Chairman Jamie Heywood about the transition from drug safety to patient safety. See you then!

This Spring, as you’re out at disease-related fundraiser events, take note of the people in those bright blue t-shirts walking, running or biking by your side. Those are patients like you!

Since its launch in 2009, more than 1,700 people (including patients, friends and family members) have taken part in the PatientsLikeMeInMotion™ program to raise money and awareness for various conditions. Here are some fun facts about PatientsLikeMeInMotion and a video of some of our members who have participated.

2009 Quick Facts

• 2009 marked the debut of the PatientsLikeMeInMotion program.
• Approximately 40 PatientsLikeMe members signed up teams to participate in PatientsLikeMeInMotion and led more than 700 people on PatientsLikeMe teams across the United States.
• In its first year, the PatientsLikeMeInMotion program donated over $9,000 for charitable disease foundations such as the National MS Society (NMSS), Parkinson’s Alliance and the ALS Association (ALSA).
• The largest member team in 2009 was formed for the annual Parkinson’s Unity Walk in New York. It’s here where we first met and interviewed some of our members (see our YouTube page to meet them).

2010 Quick Facts

• A breakout year for the program, PatientsLikeMeInMotion doubled our number of sponsored teams from 38 in 2009 to 60 in 2010.
• PatientsLikeMe members led teams of more than 1,000 people total wearing the recognizable, bright blue PatientsLikeMeInMotion t-shirts to events across 15 states.
• Together, member-led teams raised more than $15,000 for their charitable disease foundations through PatientsLikeMeInMotion donations.
• PatientsLikeMe teams were present at 20 NMSS events and 12 ALSA events, as well as fundraisers run by The National Alliance on Mental Illness (NAMI), The Epilepsy Foundation of America and the Parkinson’s Unity Walk.
• PatientsLikeMe had the opportunity to sponsor Team Mid New England at the U.S. Transplant Games in Madison, WI (see highlights here.)
• In 2010, we also launched our PatientsLikeMeInMotion Flickr page to host all of the photos our teams have submitted over the years. Check it out.

So, what will 2011 look like for PatientsLikeMeInMotion? That’s entirely up to you! Do you have an awareness event in your area you would like to be a part of? Sign your run/walk/bike team up for PatientsLikeMeInMotion and count on us to support you – both online and off!

Since 2006, PatientsLikeMe has made great strides in medical research for patients. Of course, all of the research that we do is made possible because of you, our members, and your willingness to openly share your health information, including your treatments, symptoms and outcomes.

PatientsLikeMe-led research has been published in at least six different scientific journals, including the Journal of Medical Internet Research and the Journal of Neurology, Neurosurgery, and Psychiatry. (See our Research page for a full list.) And, if you look us up on Google Scholar, you’ll see that PatientsLikeMe has been cited by others in more than 900 published scientific articles. We’re proud to have made such a noteworthy impact on medical research in five short years.

So what’s next? What can we achieve now that our patient members number more than 97,000? Well, that’s what this podcast episode is all about! Our Director of Research and Development Paul Wicks PhD stopped by PatientsLikeMeOnCall™ to discuss the future of PatientsLikeMe research, some of the challenges we face and the powerful influence patients like you can have when you share your health data.

Tune in to hear Paul’s thoughts here:

Thanks for stopping by and listening to the first podcast in this new series. Next Friday, March 25, 2011, we will be talking with our head of marketing and business development, David S. Williams III, about the importance of patients and industry working together. See you then!

PatientsLikeMeOnCall™  is proud to present a new podcast series called “A Look Ahead.”  Through these dynamic podcasts, we will be diving into the major shifts PatientsLikeMe sees ahead for patients, patient care and patient/industry collaboration.

At the end of 2010, PatientsLikeMeOnCall released an episode called “The Patient Rules.” In this group podcast, we sat down with Co-Founders Ben and Jamie Heywood, Chief Marketing Officer David S. Williams III and R&D Director Paul Wicks PhD to discuss how far patients like you have come in sharing health information and driving the healthcare process.

In this new four-part series, we will again be talking to each of them about the future of the healthcare industry. What changes are ahead in 2011? And what role will you play? To get you geared up for this series, here is a quick preview clip from my interview with David Williams about the importance of patients and industry working together.

The series premiere for “A Look Ahead” launches this Friday, March 18, 2011, with an interview with Paul Wicks. Look for the other interviews to run every Friday for the next three weeks.  To tune in, subscribe to the series on our iTunes page or listen to any of our podcasts on our PodBean page.

The PatientsLikeMe engineering team is excited to highlight some of the work that went on behind the scenes in 2010 to make this site what it is today.  We tend to write more specifically about our work on a separate blog (http://tech.patientslikeme.com), so feel free to follow our work there as well.

In addition to building the new site features you see (discussed in other blog posts), our team of engineers work tirelessly to continuously improve the site for you.  Here are some highlights of the work they’ve done in 2010:

The Team
Early in 2010, Co-Founder Jeff Cole moved over to our data operations team where he now leads the way in analyzing the data you share.  In leading the engineering team this year, I’m thrilled to report that we accomplished one of our top goals – to grow the team without detracting from the culture that makes us great.  With 13 team members and growing, we closed out 2010 with a larger team than we had in 2009 and have maintained the high caliber of engineers by refining our hiring process during the year (see the PatientsLikeMe Tech blog for more details).  We pride ourselves on hiring the best of the best Ruby on Rails engineers; Ruby is an open-source framework that lets you write beautiful code and share it with other engineers to learn and improve.

The Process
To make the site run smoothly for 80,000+ members, we need to have a solid set of processes.  This year, we used a set of processes called “Scrum,” an iterative methodology used for agile software engineering.  Here’s a peek at what happens behind the scenes to help make changes to the site more efficient and seamless to you:

• Sprints: We break our work into two week chunks called an iteration, or a sprint, during which time we complete, test and push site enhancements – everything from bug fixes to new features. By committing to getting changes out every two weeks, we can roll out new features and incorporate your feedback more quickly than before.
• Demo/Retro: We added two new Scrum ceremonies to our standard set of processes, demo and retro. At the end of each iteration, we demonstrate (“demo”) the accomplishments of our last sprint for the entire company to 1) help everyone see what is new and ask questions that we anticipate from you and 2) help us get feedback that we can use to make things better. After demo, we have a retrospective (“retro”) on the work we just did to the site. This is all part of our drive for continuous improvement.
• Tech and Wow Weeks: PatientsLikeMe has always had a philosophy of keeping technical debt (or the slow build up of tech problems) as low as possible. In 2010, we formalized our strategy for dealing with technical debt in Tech Week. To make the site more efficient for you, every two sprints we take a week to prioritize and remove pain points (such as performance issues, upgrades and bugs) or make infrastructure improvements (including server changes or new tools). After Tech Week, we then take a week where individuals around the company can work on what ever they want to “Wow” us.  Wow Week is our opportunity to try out new ideas. Some of them are great and become site features, including the new “symptom sandwich” charts (see right). We also work on ideas you’ve submitted to us during that time, like a prototype of a mobile application for the site.

• Performance: Have you noticed the site loading more quickly in 2010? We dramatically improved our performance monitoring tools to help make some big improvements in site performance. (Note: there’s more work to be done in making the “slow” pages faster.)

Looking Ahead to 2011

Here are a few of the engineering improvements we have in mind for 2011:

• Continued Performance Improvements: We will be constantly working to make the site perform better, even as we add new features. We crunch a lot of data on each page, and try to customize many of them for each of you. It can be a challenge doing this at “webspeed,” but we have new hardware for the servers in the works and will continue working on our software to improve this.
• Continued Team and Process Growth: To get even more done for you this year, we need to continue to grow the team with a high caliber of engineers and continuously improve the way we do our work. You may not see much of this directly, but you will see the results.
• Thought Leadership: PatientsLikeMe is a thought leader in healthcare and we have one of the best engineering teams in the business. This year, we will be more aggressive in sharing our tools and ideas with our software engineering community to learn and improve on what we do.

While we’re excited about our accomplishments in 2010, we promise to continue making improvements to the site in the coming year to help you make the most out of the sharing you do through our site.  Here’s to a faster, stronger, better platform in 2011.