The Value of Openness: The PatientsLikeMe Blog

Many patients say they feel alone and isolated due to their health conditions – while others report the ability to relate to others well.  We’ve also heard from a number of patients that being diagnosed with a serious illness has increased their compassion and understanding of others with health problems.

At PatientsLikeMe, we believe the difference in your ability to relate to others may lie in your ability to find and connect with patients like you – meaning, those who are facing the same disease, the same side effects, the same stage of life and much more.  After all, friends and family can offer their love and support, but it’s not the same as understanding exactly what you’re going through or what your symptoms feel like.

For example, do you ever wish you could talk to someone who’s taking the same treatments?  Or who was diagnosed around the same time?  You can!  Simply join PatientsLikeMe (it’s free), complete your profile and search for patients like you with our advanced filters, including age, gender, condition and treatment.  With more than 115,000+ patients at PatientsLikeMe, you may soon find that your ability to relate to others has improved greatly, simply because you know a lot more patients like you.

JOIN PATIENTSLIKE TODAY

When it comes to living with a chronic health condition, don’t go it alone.  Join PatientsLikeMe, where you can share your experiences with those who can relate.

With every new member at PatientsLikeMe, there is more data generated for research, more dialogue about individual experiences, and a more expansive support network.  Additionally, with more patients we can become the world’s largest and loudest representative of the patient voice.  To that end, our job in marketing is to share your stories and tell the world about our community to bring in more patients.

Here are highlights of some of the work we did this year to promote your voice and attract the 32,000+ new members we welcomed to the community in 2010.  (Enjoy the video recap below as well.)

Social Outreach

• With a full year under its belt, 2010 was a big year for the PatientsLikeMeInMotion^TM program. With slick new t-shirts and a new sign-up form, the program just about doubled in size from 38 teams in 2009 to 60 teams in 2010.  More than 1,000 people were rocking PatientsLikeMe t-shirts for their disease awareness walks this year and the company donated $14,800+ in our members’ names to almost 50 nonprofit organizations.  (More about our nonprofit partnerships and work we’ve done with them is coming from Molly Cotter next week).  Finally, we launched our PatientsLikeMeinMotion^TM Flickr page, which features hundreds of photos of all of you walking for team PatientsLikeMe.

• In January 2010, PatientsLikeMe launched its first ever podcast called PatientsLikeMeOnCall^TM (hosted by our newest marketing team member, Aaron Fleishman). Through a series of podcasts this year, PatientsLikeMe provided insight from our thought leaders on topics most important to you, spotlighted work with partners and gave patients a place for their real voices to be heard. With more than 1,000 subscribers to date, PatientsLikeMeOnCall^TM is ready to bring more content to all of our listeners in 2011. Thanks for stopping by and listening!

• Along with PatientsLikeMeOnCall^TM, PatientsLikeMe continued to spotlight what you’re saying, learning and sharing through our blog (yes, we do manage the content for this lovely page!), Twitter, Facebook, YouTube and more. Our Twitter followers continue to grow with more than 2,100 followers. Our Facebook page now has more than 1,000 fans and our YouTube videos have a combined number of 74,258 views total, with 35,469 views this year alone.

Media Coverage:

Throughout the year, PatientsLikeMe was featured in a number of media stories (see our press page) that highlighted how you are making a difference for other patients and the healthcare industry as a whole.  In fact, many of you were able to share your stories with the world - from your disease experiences to your participation on PatientsLikeMe.  Thank you to everyone who contributed!  Some highlights include: Fast Company (“2010 Most Innovative Companies”), Fortune/CNN (“Tweet your chart”), Wall Street Journal (“Scrapers’ Dig Deep for Data on Web”), Fox News videos, Women’s Health (“Feel Sick Click Here”), NPR (“What Happens When People Migrate To The Internet”), New York Times (“When Patients Meet Online”), TIME magazine (“Group Therapy”) as well as articles in Bio-IT World, InformationWeek, Nature Biotechnology, PharmaTimes, and SmartMoney.

Events, Direct Mail and Newsletters
In addition to attending some events (e.g., 2010 Transplant Games, Parkinson’s Unity Walk) to talk directly to patients, PatientsLikeMe also reached out to medical centers (e.g., epilepsy and transplants) to inform physicians about how patients are benefiting from being members of PatientsLikeMe (see above).

Finally, we’re thrilled to hear how much you enjoyed the monthly community newsletters in 2010.  Altogether, we published 90 newsletters this year and featured many of your fellow community members in patient interviews (which also appeared here on the blog). Based on your feedback, we also finally launched an archive section on our site so you can catch up on all the latest and greatest from PatientsLikeMe.

Spreading the word is what we do in marketing, and we can say it is has truly been a pleasure telling the world about all that you do and all that you share through PatientsLikeMe.  2011 will only be better.  Thank you and Happy New Year!

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.

The research team is very proud of how our team has grown in 2010 and the impact we’ve made in the academic community.  In 2010 alone, PatientsLikeMe and our work were mentioned in scientific literature more than 133 times.  All of this is because of what you share with us.

Yesterday, we highlighted some of the research work we’ve done in 2010 across our four newest communities.  Today, we’ll highlight our older communities.  Below is also a highlights reel of some of this work.

HIV

• Throughout 2010, we discussed the goal and benefits to measuring your quality of life (QoL). This concept of measuring QoL started in our HIV Community at the end of 2009. Earlier this year in a blog and podcast, Researcher Michael Massagli Ph.D. discussed some of the insights that are being shared by HIV patients through the QoL survey. For instance, we found that the average physical, mental and social well-being score of patients with a CD4 count below 200 is significantly lower than for those of you with a count above 200.

Parkinson’s Disease

• The Parkinson’s Community has always excelled in reporting their health status through the Parkinson’s Disease Rating Scale (or PDRS). When answering the questions on this scale, members often asked us: “Should I respond when my drugs are working and I’m at my best (’On’) or when my drugs aren’t working and I’m at my worst (’Off’)?” Back in October, we released a brand new feature in the PD community that allows you to rate your symptoms as either “On,” “Off”, or in both conditions so now you can see the effect of your medications for yourself.

Multiple Sclerosis

• We hear a lot from you about the difficulty of adhering to medication. Early last year, our research team developed a new rating scale for patients with MS to assess the difficulties of sticking to their medication. We presented findings at the Consortium of Multiple Sclerosis Centers (CMSC), the main North American conference for MS specialist physicians, nurses, and researchers. The team is currently working on publishing these findings.

ALS

• Co-founder Jamie Heywood discussed our research into lithium in ALS at the TEDMED conference late in 2009. In early 2010, TEDMED released the video of his presentation where he shares our vision of the future of medicine. The team is currently working on publishing the lithium findings.
• PatientsLikeMe, in collaboration with researchers at Oxford University, discovered that when ALS patients get symptoms in their arms first, they’re most likely to get it in their dominant hand. This research was presented at the ALS MND Symposium and cited on this MND Research blog.
• We also collaborated with the Northeast ALS Consortium (NEALS) to examine the decision-making process that patients with ALS go through when considering whether or not to take part in research studies; this was published in the peer-reviewed journal Amyotrophic Lateral Sclerosis.

Here’s a short video highlighting much of the research you’ve helped us do in 2010.

Finally, I want to recognize how our team has expanded this year to better focus on what matters to you most.  Some new additions include:

• Brant Chee, Ph.D. - a specialist in natural language processing and detecting drug safety data in patient reported text
• Kate Slawsky, MPH - an outcomes researcher helping to develop custom surveys for our partners and our platform
• Shivani Bhargava - a research assistant supporting the team in ensuring our platform holds high-quality data about our patients

Thank you all for having a voice in research. There’s so much being learned from what you are sharing every day, and we are excited about what 2011 will bring.

The PatientsLikeMe research and development (R&D) team is excited about what we can all share and learn in 2011.  Here’s a look back at some of what patients like you shared with us, and what we then shared with the world, in 2010.

The R&D team published and presented some unprecedented insights based on what you shared with us this year.  In addition to attending and presenting at some noteworthy conferences in 2010, we also published a series of blogs and podcasts pulled together just for you.

Based on your feedback, the R&D team also implemented some changes to the medical architecture that will help improve the research we do, as well as your experience as a patient on the site.  Ultimately, we are working to develop tools that help you answer the question: “Given my status, what is the best outcome I can hope to achieve and how do I get there?”

Today and tomorrow, we’ll be highlighting some of the work we’ve done in 2010 focused on various communities.  Today, we start with the following (listed from newest to oldest community):

Organ Transplants

• Researcher Catherine Brownstein MPH, Ph.D. presented a poster at the American Society of Nephrology (ASN) Renal Week in Denver. We compared the profile of our Transplants Community to published data from the UNOS/OPTN databases and found that about half of our patients knew about the exact degree of tissue matching they had with their donor. We found the fewest mismatches in organs that had come from deceased, rather than living donors. We also found that within the living donors the closest matches came from siblings, followed by parents, children, and then any other relative.

Epilepsy

• In December, the team attended the annual American Epilepsy Society (AES) conference and presented a poster comparing our data to the Pharmetrics insurance claims database. We found that our Epilepsy Community is a little more likely to be female, more likely to be in their 20s-40s, and that they are more likely to be taking multiple anti-epileptic drugs than the broader epilepsy population. Exploring the biases in our data set and being transparent about them is one of our core values as a science team.
• PatientsLikeMe is running an ongoing patient-reported outcomes (PRO) study with UCB to measure the physical, social and mental well-being of people with epilepsy over time. By the end of 2010, members of our Epilepsy Community had completed more than 1,300 PRO surveys. Thanks to all of you who contributed.

Fibromyalgia

• The R&D team recently blogged about a report comparing our Fibromyalgia Community to the wider fibromyalgia population and revealed we are now able to declare with confidence that our community very closely matches the fibromyalgia community at large.
• In 2010, we published a study entitled “Sharing Health Data for Better Outcomes on PatientsLikeMe” in the Journal of Medical Internet Research (JMIR). The study, conducted across several of our communities, established a link between sharing health data and benefits experienced on our site. The fibromyalgia-specific findings were that 21% of fibromyalgia members of our site strongly agreed or agreed that they had changed physicians as a result of using PatientsLikeMe, higher than the rate in MS (15%), mood (10%), Parkinson’s (9%), HIV (8%), or ALS (6%).
• In response to popular demand for more research in fibromyalgia, the R&D team has also started reaching out to members of the scientific community to design research studies to take place in early 2011.

Mood

• Looking again at the JMIR study specifically within the Mood Community, we found 26% of users agreed or strongly agreed that using the site had reduced thoughts about self harm; 23% agreed they had decided to start therapy or counseling after interacting with others on the site; and 22% agreed they needed less inpatient care as a result of using PatientsLikeMe.  Here’s a video where I present some of these results, and give a walk-through of the Mood Community, at the UMASS Medical School’s Psychiatry Grand Rounds this year.
• We also recently introduced a new tool in all of our communities called “InstantMe” to help you put your experiences in context.  Based on the feedback we received from members of our mood community about the pilot tool (called “InstantMood”), it is now available for everybody.
• In response to popular demand for more research in mood, the R&D team has also started reaching out to members of the scientific community to design research studies to take place in early 2011.

More highlights, including a video, coming tomorrow.

Thanks everyone for a great 2010.  As we kick off the New Year, PatientsLikeMe would like to take a quick look back at the road we’ve traveled together this year.  We think of all these improvements as laying the groundwork for even more exciting changes to come in 2011.

At the start of 2010, we set out to tackle two very important goals that could help you, our members, get the best possible experience out of PatientsLikeMe:  1) unify the way we collect medical information and 2) give more information back to you so you can see how you fit in and compare your experiences with others.  Kate Brigham recently talked about some of the improvements we’ve made on the second goal in her Share and Compare post, but I’d like to share a bit more about the first goal.

Our communities have a lot in common despite their different conditions and health concerns.  As Tommy Maker said in a recent newsletter interview, “I’ve learned that we all care enormously for each other and are very eager to help those who find themselves in the same boat as we are.  But most of all I’ve learned that I am not on my own.”

“We are all in this together” is the sentiment we hear from you time and time again.  In that spirit, we made a lot of changes to unify your experiences across all our communities.  Many of these improvements started in one community where some of you tried functionality and gave us good feedback so we could improve things and share them with all patients.  With the rollout of every product development below, you can now better share and compare your experiences.

Here are some examples of ways our communities have helped each other learn and grow in 2010:

• Flash charts: We piloted these in the ALS community last January and received a lot of great feedback.  Since that successful pilot, we converted the profile charts in all our communities to these more flexible and easier to understand charts.  This change also enabled future enhancements, like re-organizing your profile and better Doctor Visit Sheets.

• Condition History: While many of the questions you answer on PatientsLikeMe are very specific to your medical condition, there are a lot of questions that apply to any and all patients.  When did your symptoms start?  Do you have a diagnosis?  Are you taking any treatments?  Now members across communities answer many of the same questions in the condition history so everyone can share and see how their answers compare with the rest of the community.

• InstantMe: This idea of asking you a quick question about how you are doing started out as InstantMood, and was available only to members of the mood community.  They gave us great feedback and helped us to improve it (especially adding a “neutral” answer choice) before we rolled it out to patients in all our communities in November.  It’s now called InstantMe.

• Quality Of Life: The quality of life survey we just made available to all members at the end of December was piloted in the HIV and Organ Transplants communities.  By having a way to measure your social, mental and physical well-being, now you can gain a better understanding of how your condition affects you - the whole you.

Thank you to all the members of our community who continue to share and learn along with us.  Watch this year in review video to see how you all have contributed to making the patient experience on PatientsLikeMe one of a kind.