The Value of Openness: The PatientsLikeMe Blog

FOR IMMEDIATE RELEASE

PATIENTSLIKEME POLL REVEALS UPCOMING HOLIDAY SEASON MOST DIFFICULT FOR DIABETES PATIENTS CONTROLLING BLOOD GLUCOSE

PatientsLikeMe Introduces Daily Glucose Monitoring Feature in December

CAMBRIDGE, MA - November 22, 2011 - According to a recent PatientsLikeMe® Poll, one out of every two type 2 diabetes patients (50%) and nearly two out of every three type 1 diabetes patients (65%) say having diabetes affects their holidays.  More than half of respondents (59%) say the upcoming holiday season, marked by Thanksgiving and Christmas, is most difficult for controlling blood glucose; 25% don’t find the holidays difficult.  When asked what strategies they use if their blood glucose rises after increased consumption during the holiday, diabetes patients had mixed responses with three in four type 1 patients (76%) changing their medication dosage, while type 2 patients try alternative things like more exercise (34%) or just avoiding glucose-raising items altogether (34%).  Two hundred and twenty-six (226) diabetes patients sharing their health data on PatientsLikeMe.com responded to the poll.

“This week represents the beginning of a challenging season for diabetes patients faced with group meals and gatherings that could impact their health,” says Ben Heywood, President and Co-founder of PatientsLikeMe.  “We all have family or friends with diabetes and these poll results give a glimpse into some of the challenges they face and the strategies they use to overcome them.”

Are diabetes patients sensitive about discussing their disease with family and friends at the table during the holidays? An overwhelming 90% say no.  However, more than one in three patients (38%) still feel friends and family don’t understand how diabetes affects them during the holidays.  With holiday meals and parties so prevalent over the next six weeks, many of the respondents (84%) say they manage with what’s available, while 16% make some adjustment to accommodate for their diabetes (7% host to be in control, 7% eat before going out and 2% bring their own meal).

PatientsLikeMe will introduce a daily blood glucose monitoring feature for its 2,000+ diabetes patients in early December. Patients will be able to report daily glucose levels, as well as continue sharing and learning from HbA1c scores (used to monitor the glucose control of diabetics over time), treatments and dosages (such as Metformin or insulin) and symptoms and severity (including blurry vision, excessive thirst and fatigue).  In recognition of Diabetes Awareness Month, PatientsLikeMe recently collaborated with industry and nonprofit partners to launch the CallingAllTypes (www.callingalltypes.com) campaign in an effort to help raise awareness and funds for the disease.

NOTE TO EDITOR: The complete PatientsLikeMe® Poll results can be downloaded here. All poll results must be sourced as originating from PatientsLikeMe®.

PatientsLikeMe^® Poll Methodology
Between November 14th and November 18th, PatientsLikeMe invited all diabetes members to participate in the PatientsLikeMe® Poll, with 226 members completing the poll. Respondents represent patients with both type 1 diabetes (24%), where patients are usually diagnosed at a young age and need to daily blood glucose monitoring and insulin therapy, and type 2 diabetes (73%), where patients develop the condition gradually over time typically due to environmental factors resulting in increased blood glucose levels. In this poll, more than 200 respondents shared their HbA1c scores, with 49% reporting a score of 7.0 or lower (which represents well-controlled glucose).

About PatientsLikeMe^®
PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on www.twitter.com/PatientsLikeMe and http://blog.patientslikeme.com]

On October 24-25th, PatientsLikeMe attended the 8th Annual Patient Adherence, Communication and Engagement (PACE) Conference in Philadelphia. The event focused on how the healthcare industry can deliver measurable improvements in patient adherence (i.e., taking medications as prescribed by your doctor).  Put simply, how can we help patients like you take the correct dosages at the correct times?

Why does this topic merit its own conference? Well, as we learned at PACE, medication non-adherence costs more than $300 billion every year in the US alone. You read that right. And this staggering amount is comprised of more than just hospitalization and emergency room costs. It also includes things like lost employee productivity and the cost for less optimal patient outcomes. Essentially, think of it as $300 billion the US could be saving each year - but currently is spending - in the midst of an economic downturn.

Here are some of the other noteworthy takeaways:

• Of that $300 billion, more than $100 billion is concentrated in four cardio-metabolic disorders: diabetes, hypertension, high cholesterol and heart disease.

• A key factor in non-adherence is that patients may frequently have an incorrect understanding or an unrealistic expectation from their doctor of what their medications will do for them.

• Recently passed US legislation is attempting to change the way doctors are paid. The new law provides financial incentives for health plans to implement quality measures that hold doctors accountable for impacting patient outcomes.

• Many new solutions, such as telemedicine and the patient-centered medical home, are being piloted and studied. The goal is to learn how technology can impact patient outcomes via medication adherence services and remote medical care.

• To remain relevant to patients, biopharmaceutical companies now recognize that they must incorporate the voice and experience of the patient into their decision-making processes.

Last but not least, our very own Chief Marketing Officer and Head of Business Development David S. Williams III spoke about the work PatientsLikeMe is doing around medication adherence. Specifically, he focused on patient-to-patient interaction as an influential driver of medication adherence and how we can give patients the tools they need to (1) understand how their medication is working for them and (2) hold each other accountable for following their doctors’ instructions.

Do you believe connecting with - and learning from - other patients is critical to adherence?  Share your thoughts in the comments section.

In June, we told you about our new partnership with BBK Worldwide, a pioneer in healthcare communications. Now, we’re excited to report that our first outreach project together is kicking off.

In preparation for American Diabetes Month in November, PatientsLikeMe and BBK Worldwide announced today the launch of a new online diabetes health movement entitled “Calling All Types.” This innovative social health initiative encourages people with type 1 and type 2 diabetes to share their real-world experiences and help raise awareness of the disease, which affects 25.8 million children and adults in the US (or 8.3% of the population).

Are you a diabetes patient? Share your thoughts and stories at CallingAllTypes.com. Within seconds, social media outlets including Twitter, Facebook and YouTube will pick up and share your words across the Internet. The goal is to create instantaneous viral awareness that will inform the public, including policy makers and health professionals, about the real toll diabetes takes on individuals and families.  (Check out the video below to learn more.)

In addition to rallying supporters at CallingAllTypes.com, the campaign is focusing much of its initial awareness-raising efforts in Atlanta, Georgia, where diabetes prevalence exceeds the national average by a full percentage point. “We are incorporating a “take a community by storm’ approach,” says Bonnie A. Brescia, founding principal of BBK. For each of the first 10,000 visitors to post a comment at CallingAllTypes.com during November, the campaign will donate $1 to the Atlanta chapter of the American Diabetes Association.

So if you’ve got something to say about diabetes, the fastest-growing chronic disease in US history, don’t hold back. Spread the word today at CallingAllTypes.com. Then, if you haven’t already, join the diabetes patients at PatientsLikeMe who are coming together to share experiences, find others like them and take control of their health.

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.

In August, we proudly announced that our Research & Development Director, Dr. Paul Wicks, PhD, had been named “Humanitarian of the Year” and a TR35 Honoree by MIT Technology Review magazine. This week, he received both awards at MIT’s annual Emtech event, a two-day conference focused on emerging technologies held at MIT’s Boston campus.

Below are links to a few videos highlights from the event, including the award presentation on Tuesday night. As you’ll hear in the organizer’s introduction, the criteria for TR35 (the best young innovators under the age of 35) is to recognize individuals who are doing transformative work. “They are presenting a concrete solution to a big, almost ideally civilization-scale problem.” MIT Technology Review then names one TR35 recipient as “Humanitarian of the Year” to recognize the use of technology in “progressing the human condition.”

What does Paul have to say about receiving this incredible honor? Jump to the 3:40 mark in the video below to see his onstage interview and award presentation.

You can also get a quick glimpse here of TR35 recipients’ work on emerging technologies in health care or hear more in-depth from Paul and fellow award winners in this 40-minute panel discussion.

“We founded PatientsLikeMe on the concept that sharing health data could lead to a more empowered patient and better overall healthcare system. It’s an exciting and giant step forward for us as an industry as we unite around making health data more accessible to those that matter most – the patients.”

– Ben Heywood, PatientsLikeMe Co-Founder, President

Today the first-ever Consumer Health IT Summit is taking place in Washington, DC. Sponsored by a division of the US Department of Health and Human Services (HHS), this new initiative is designed to empower individuals to be more engaged in their health through the use of health information technology (IT).

During the summit, both government health agencies and private sector organizations like PatientsLikeMe will be highlighting the ways they plan to support your access to electronic health data. For example, HHS Secretary Kathleen Sebelius unveiled new proposed rules that would expand the rights of patients to access their health information as well as a model privacy notice template that can be used in the process. In addition, HealthIT.gov, a new resource for consumer health empowerment, was announced.

PatientsLikeMe is participating in this important initiative by making our own pledge to you, which we are committed to completing by spring 2012.

“We pledge to make it easier for individuals and their caregivers to have timely access to their health information in a convenient, useable format through our website.  As we continue to encourage and enable them to use this information to improve their health and their care, we pledge to:

1) improve patients’ accessibility to their personal health information by making our Doctor Visit Sheet (a document detailing an individual’s health data and experience) downloadable through multiple formats, including electronically readable formats like PDFs and the “Blue Button” ASCII text standard format;

2) encourage patients to dialogue with their peers and providers about the benefits of accessing and understanding their health data;

3) continue “Putting Patients First” by building a website that helps them to share, access and learn from their health information online.”

What’s a Blue Button, you ask? An open government initiative, Blue Button represents a collaboration between the Veteran’s Administration and HHS to develop an online feature that would enable Veterans and Medicare beneficiaries to easily read, use and share their personal health information with providers and others they trust. The ASCII text file format was selected for its ease of use by individuals, while allowing computers to easily “read” the information.

Sponsored by the health blog Dose of Digital, the Dosie Awards were created to recognize the best examples of social media in the healthcare industry. Now in its second year, this award program was expanded in 2011 to include both Judges’ Choice and People’s Choice Awards. Within each category, a Gold, Silver and Bronze medal is bestowed.

PatientsLikeMe is proud to be the recipient of the 2011 Judges’ Choice Gold Award for Best Patient Community (Non-Brand Controlled). A distinguished group of industry leaders judged this category, and we are extremely honored that they deemed us “the best of the best.” As a result of this award, we can now display our “Judge’s Choice Gold Dosie Award” badge on the PatientsLikeMe website.

Check out the full list of 2011 Dosie Award winners here.

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our June 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 over the last few rather eventful months, and if you are member who’s not opted in to the newsletter, sign up today.

MONTHLY MUSINGS

How do you find a clinical trial that’s right for you?

There are currently more than 30,000 actively recruiting clinical trials in the US. How do you stay on top of which ones you might be A) interested in, B) eligible for and C) within driving distance of?

It sounds like a tall order, but thanks to our new clinical trial search feature, it’s not. Now, you can search real-time listings on our Clinical Trials page (which pulls directly from ClinicalTrials.gov) and bookmark any trials of interest. Beyond parameters such as disease, age, gender and zip code, our search filters allow you to customize your search by keyword, trial phase, type of intervention and the distance to the nearest trial site.

Too busy to do regular searches? No problem. We have added a new link on your profile that shows the number of actively recruiting trials you may be eligible for based on your profile data. That way, you’ll get a heads up any time you log on to your profile. Simply click through to see what they are, who else at PatientsLikeMe may be eligible, where the study locations are (in helpful map form) and how to enroll.

Sounds easy, doesn’t it? We thought that’s how it should be, which is why we’ve been working hard to make this feature to available to you. Turns out others think it’s a pretty great idea too. We were recently honored with the “Best in Show” award at the 2nd Annual Health Data Initiative Forum for this innovative service.

THIS MONTH’S SITE IMPROVEMENTS

We are constantly working to improve our site. In this section, we’ll keep you up-to-date on new tools and features designed to make your PatientsLikeMe experience even better.

Here are our top functionality enhancements for June:

Ever wonder if any new patients like you have joined the site? Now you can be alerted by email when there are new results to a saved patient search. Simply click the alert button (the bell icon) next to your saved search to receive notifications.

For instance, want to know when a new patient taking a particular treatment joins? Easy. Create a saved search for that treatment and click the alert button.

The best way to see how your treatments, symptoms and conditions are affecting your overall health is to keep your profile up-to-date. Sign up today to receive reminder emails that make it quick and easy to keep your profile current. If you already receive these notifications, you’ll see we’ve updated them a bit.

Mashable, the pioneering digital and social media news site, has pronounced today Social Media Day. Why? “Social media has changed our lives,” they wrote in 2010, prior to launching the event. “It has not only changed the way we communicate, but the way we connect with one another, consume our news, conduct our work, organize our lives, and much more. So why not celebrate?”

Mashable is encouraging everyone who uses social media to take part in the second annual celebration. Some examples including organizing a Social Media Day get together on Meetup, posting photos from your get together on Facebook and using the hashtag “#smday” on Twitter. We would add updating your PatientsLikeMe profile and reaching out to another patient like you to this list of possible celebratory activities.

That’s because, at PatientsLikeMe, we’ve seen how social media has transformed the lives of patients. Before, there was only the information and advice provided by your doctors. Now, you have access to a wealth of real-world experiences and data from patients around the globe. As a result, you can ask smarter questions, make better decisions and take greater control of your own care.

Social media has also helped to accelerate medical research. A stellar example is ALS Untangled, a research consortium that uses social media (including Twitter, PatientsLikeMe, NING and open-access journal articles) to investigate alternative and off-label ALS treatments. There’s also the unprecedented ability to survey and learn from thousands of patients, as R&D Director Paul Wicks discusses in this recent video.

So if social media can help both patients and researchers, it’s worth celebrating, no? Share your thoughts on how social media has impacted your life in the comments section below. (And, yes, that would count as another social media activity!)

Recently, I had the pleasure of helping to represent PatientsLikeMe at the 2nd Annual Health Data Initiative Forum, which is known as “Health Data-Palooza” to its friends.  (See our first blog post about this event here.)

The forum was conceived as a way to showcase the wonderful things that people are achieving with open government health data, and it was exciting to see the breadth of applications that are being developed. We saw both the real-world efficacy of a system like Asthmapolis, which uses GPS to track where and how often you use your asthma inhaler, as well as Palantir’s mind blowing demo of how to hunt for the source of a food born illness, which I could only describe as “indistinguishable from magic.” Seeing that the federal government is already starting to get results from this kind of open innovation was really heartwarming for me.

We were especially honored to win the “Best in Plenary Award” (aka “Best in Show”) for our recent integration with ClinicalTrials.gov, which resulted in our new clinical trial search feature. As one of the engineers involved in this project, it was really great to see how quickly something like this can come together. PatientsLikeMe has a great culture of encouraging innovation, which is manifested in our decision to declare every sixth week “Wow Week.” During this special week, every engineer has the latitude to experiment with whatever they’d like.  Thanks to the existence of open data sources, there are an amazing number of things we can try without even needing to ask for permission or special access.

One “Wow Week,” PatientsLikeMe Data Analyst and Software Engineer James Kebinger experimented with integrating the listings from ClinicalTrials.gov into our platform. We are committed to using open source tools and data as much as possible at PatientsLikeMe, so James’ idea to pull data from ClinicalTrials.gov was a natural continuation of that philosophy. It took just one more week from there to get to the point where we all realized that this was something that could deliver real value to both our patients and the folks running the clinical trials.

Here is a video of PatientsLikeMe Chairman and Co-Founder Jamie Heywood presenting our new clinical trial search feature at the “Health Data-Palooza” event:

Data mashups have been the buzz for a while now, and there are a number of interesting results that have come out of integrating two large datasets. I think what excited people most about our application was that we found a really clear benefit to patients.  Of course, this wouldn’t have been possible without the comprehensive data found on every patient profile at PatientsLikeMe. We like to think about doing as much as we can for our patients while not having to ask additional questions, and I think this was a great example of succeeding in that aim.

How do you make sense of all the information and stories that come with chronic illness? That’s exactly the challenge that the Patient Experience Team has taken on at PatientsLikeMe. Our goal is to create data visualizations that help you gain insight into your health, recognize emerging patterns and learn from one another’s experiences.

Recently, I flew to Seattle to give a talk entitled “Adventures in Data Visualization” as part of the Web App Masters Tour (WAMT). (I’ll also be presenting it again at the final WAMT event in Minneapolis, which takes place June 27-28th.) During my talk, I share our process for translating people’s individual health stories into data – which, unlike text-based stories, are something that can be measured, compared and visualized.

Data visualizations are great at helping people process complicated information quickly and answer questions that can be much harder to answer other ways. For example, is my experience normal? How are my treatments affecting my symptoms? Is my quality of life improving? What happens if I stop taking my medication? With data visualization, you can see patterns that correspond with changes to your medications, lifestyle modifications and more.

Ultimately, PatientsLikeMe is creating a shared visual language that allows your story to be part of a larger story, one that is enriched by data. We are continually working to make it easier for you to learn from the data you share, and that patients like you are sharing as well. Why is this so important? It allows you to put your story in context and find others like you. Ultimately, it allows you to see what you can do to achieve the best health outcome possible.

Have you “seen” something on your profile charts – or that of other patients – that helped you answer your questions? Share your experiences with data visualization in the comments section.

CAMBRIDGE, Mass. — June 14, 2011 — Today, PatientsLikeMe, the leading online health platform, and BBK Worldwide, a pioneer in healthcare marketing and patient recruitment, announce an alliance to jointly offer their services to pharmaceutical companies and other industry stakeholders interested in enhancing patient recruitment and retention for ongoing and upcoming clinical research studies.

Both companies have a long-standing commitment to raising awareness of trials among patients, as recently underscored by PatientsLikeMe’s award from the Institute of Medicine for its new clinical trial feature and by BBK’s industry-leading research, such as its widely-cited “Will and Why” surveys of global patient attitudes toward participation in clinical studies.

“There’s great synergy in our two companies working together,” says Joan F. Bachenheimer, founder and CEO of BBK Worldwide.  “With our leading clinical trial solutions and PatientsLikeMe’s unparalleled patient engagement platform, we’ll be able to create a steady stream of interested and eligible clinical trial participants for clients with the greatest depth of members’ health information in the industry.”

Adds David S. Williams, Chief Marketing Officer of PatientsLikeMe, “This is a crucial next step in bringing exposure of clinical trials to our members, beyond just giving them access to ClinicalTrials.gov listings on our site.  By partnering with BBK, an established leader in the space, we can now reach many more patients to let them know about potential clinical opportunities that address their specific, unmet medical needs.”

To help expand its targeted patient population for recruitment purposes, the two companies will launch national and regional multi-media campaigns to help drive patients to sign up for PatientsLikeMe, where there are currently 100,000+ patients with more than 500 conditions.  While patients will benefit from sharing their health data and experiences on the site, BBK and PatientsLikeMe will offer industry partners tiered access to interested patient members who meet their trial criteria. Trial sponsors also will be able to leverage the PatientsLikeMe platform and the BBK technological solutions and communications expertise to establish powerful retention programs.

The partners will unveil their patient recruitment and retention program at the 47th Annual Drug Information Association (DIA) Meeting in Chicago, IL next week.

About BBK Worldwide

BBK Worldwide is globally renowned for accelerating time to market for new and improved medicines and treatments by using innovative strategies, programs, and technologies to streamline the clinical trial enrollment process. With offices in Boston, London, Los Angeles, and Osaka – as well as strategic alliance partners in every world region where clinical trials are conducted – BBK Worldwide has evolved into the internationally recognized leader in patient recruitment. BBK continues to reshape its industry by combining its visionary perspective with three decades of experience enrolling thousands of clinical studies in more than 70 countries. www.bbkworldwide.com

About PatientsLikeMe

PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on Twitter.com/PatientsLikeMe and http://blog.patientslikeme.com]

Today, PatientsLikeMe announces its expansion in the following news release. (You can click on the image on the right to see a visualization of real-time profile views on PatientsLikeMe.)

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CAMBRIDGE, MA–(Marketwire - April 11, 2011) - Today, PatientsLikeMe (www.patientslikeme.com) announces the expansion of its platform and invites patients with any condition to join. The five-year-old free online health data-sharing website was previously only available to patients with 22 chronic conditions (including ALS, Parkinson’s disease, HIV, depression, epilepsy, fibromyalgia, multiple sclerosis and organ transplants). In February, the company closed to new members and allowed its 100,000 members to test out its new design and upgraded functionalities, such as adding multiple conditions (or co-morbidities) to their health profiles and measuring their mental, social and physical well-being (or quality of life).

“Every ten seconds on our site, a patient shares an answer to a survey question about their health. Approximately every minute, one of our members is viewing another’s profile to see these answers. It’s clear patients see the benefit of sharing deep health information,” says President and Co-founder Ben Heywood. ”We’re excited to see how this openness and sharing will potentially change thousands more lives as we open the doors to every patient today.”

Since launching in 2006, members of the website have shared data on more than 9,700 treatments and 4,800 symptoms related to their chronic conditions. During that time, PatientsLikeMe also received requests from 23,000+ patients asking the company to “build a community” for more than 5,000 conditions, everything from the more commonly known conditions like rheumatoid arthritis, autism, diabetes and cancer to rare diseases like ankylosing spondylitis and Niemann-Pick disease.

Adds Heywood, “Patients can now share multiple conditions, symptoms, treatments and more through their profiles. With these changes, we’ve improved our ability to help people find more patients like them.’”

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.