The Value of Openness: The PatientsLikeMe Blog

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.

“We’re just getting started on a long road to really impact your individual disease and your quality of life…”

Each week this month, we’ll be posting a video interview with a member of the PatientsLikeMe executive team.  You’ll hear from Ben Heywood, Jamie Heywood, David S. Williams and Paul Wicks, Ph.D. about what the recent changes to PatientsLikeMe mean for patients, research, industry and the entire medical establishment.

Today, listen in to hear what Ben has to say about why we’re on this “road,” what has been improved with the recent upgrades and how sharing your own health journey moves us forward.  You can also see last week’s video teaser here.

Congratulations to our R&D team here at PatientsLikeMe for its most recent paper published in Nature Biotechnology (”Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm”).  The full paper has been made available by Nature so you can read the results and access all of the supplemental data and figures.

Below are links to some of the media coverage about the paper, as well as a link to our own news release announcing the study results.

A special thank you to all of the ALS patients on our site for sharing the data that helped create this new insight and accelerate discovery like its never been done before.  Now that we’re open to all patients with any condition, we know your sharing will inspire the masses to share and learn together.

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Marketwire (our news release)
PatientsLikeMe Social Network Refutes Published Clinical Trial

The Wall Street Journal
ALS Study Shows Social Media’s Value as Research Tool (paper)
The Future of Social Network-Based Trials (blog)

Boston Business Journal
PatientsLikeMe hits ALS study

FierceBiotech IT
PatientsLikeMe study challenges prior ALS claims

Last week, we had the opportunity to be a part of the Association of Health Care Journalists (AHCJ) annual conference in Philadelphia, PA.  Carla Johnson, medical writer for the Associated Press, invited PatientsLikeMe to be part of her session entitled “Tapping into the e-patient phenomenon.”  It was a great opportunity for us to help healthcare journalists learn more about how to interact (and coordinate interviews) with patients participating in online communities like ours.

What better way to represent the patient voice than to actually have a patient speak on your behalf?  We invited Pamela McGhee, an active member of PatientsLikeMe who had previously done some media interviews, to sit on the panel and provide some tips to journalists on what’s important to patients interviewees.  Pamela was a welcomed and refreshingly enthusiastic panel participant who shared those tips (i.e., the importance of following up after an interview or doing your homework beforehand) as well as her experiences of living with MS and using PatientsLikeMe to “improve her life.”

Moderated by Carla, the rest of the panel included Dan Childs, the coordinating producer for ABCNews.com, and John Novack, director of communications at Inspire.  Both had a lot to share about their experiences in coordinating and conducting patient interviews.  A video highlight reel is below, courtesy of Joy Robertson at KOLR-TV.

In addition to having Pamela there to share her personal experiences of interacting with the media, we also handed out these one-sheets, which outline how to arrange an interview at PatientsLikeMe, as well as four of our own tips for conducting successful patient interviews.

Thanks again to Pamela for being such an inspirational and empowered patient, one willing to openly share her stories and experiences for others to learn from!

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.’”

This year, we’ve finally found a few moments to get the team together and share our story as a company - and capture it all on video.  Below are some cool pictures of our video crew and PatientsLikeMe team setting up for a recent video shoot.  We hope to have the final video up soon, so stay tuned. Happy Wednesday!

At PatientsLikeMe, we have a Privacy Policy that explains what we do with the health data that patients like you share.  But as many of you know, we also have an Openness Philosophy, which outlines what we believe are the substantial benefits of being open versus private about your condition.  Here’s an excerpt:

“Currently, most healthcare data is inaccessible due to privacy regulations or proprietary tactics. As a result, research is slowed, and the development of breakthrough treatments takes decades. Patients also can’t get the information they need to make important treatment decisions.

But it doesn’t have to be that way. When you and thousands like you share your data, you open up the healthcare system. You learn what’s working for others. You improve your dialogue with your doctors. Best of all, you help bring better treatments to market in record time.“

But what do you think about openness?  We realize this is a personal decision that you have to make not only as a member of PatientsLikeMe, but also as part of your everyday life.  Yesterday, we delved into the results from a recent patient poll on how openly you share your diagnosis with various people in your life (Patient Choices: The Shape of Sharing).  Today, we’ll to take a look at how PatientsLikeMe has influenced the openness of patients like you.

In the poll, we asked if you had told more people about your condition as a result of PatientsLikeMe.  32% of you said yes, while 68% of you said no.  Thus, roughly a third of you report that you have increased your level of openness due to PatientsLikeMe.

Those percentages change slightly when you break out the answers by condition.  Nearly half of respondents with ALS/PLS/PMA (42%) and epilepsy (40%) have told more people as a result of people a member of our site, whereas approximately one in four people with chronic fatigue syndrome / ME (19%) and HIV (25%) have shared more.

So do these findings mean there’s an increase (or bias) in openness activity among the population?  We’ll need to do more rigorous research to figure that out.  According to Alan Westin¹ of Columbia, a health social scientist who measures privacy trends among the general public, only 15% of people are “privacy unconcerned” meaning that they are willing to share their health information without fear of discrimination or retribution.  The next 60% are considered “privacy pragmatists,” which applies to people who are willing to share some health information if the benefits are explained clearly and well understood.  PatientsLikeMe may now appeal to privacy pragmatists because of the clear benefits shown from information sharing.

Clearly, social media provides a new method of disclosure, and patients like you everywhere must choose whether it’s right for you.  Is it easier to tell people online instead of face-to-face?  Are there more benefits than risks?  And ultimately, is it better to be open or private?  It’s up to you to make those choices for yourself.

We’ll close with a Mood patient’s experience of how using the site has helped to share more:

“Although I have not created a large number of posts on PatientsLikeMe (PLM), just the few posts that I created gave me confidence in explaining my condition and how it has impacted my life.  PLM allowed me to explore others’ perceptions of their experiences:  Knowing I ‘belonged’ here, and was understood here was valuable in my recovery.  So being comfortable here, at PLM, made me feel more comfortable discussing my diagnosis away from PLM.”

REFERENCES

1.  Westin, A.  “Americans’ Changing Concerns About Health Privacy.”  As presented at the National Academy of Sciences ceremony.  2008.

Patients like you with life-changing conditions have to make choices every day, just like anyone else. These choices, however, typically have more at stake than how to RSVP to a party or even whether to walk away from an “underwater” home. For patients like you, your lives may be at stake.

I have watched my mother deal with three different types of cancers for more than 25 years, and the choices she had to make for me and my siblings to be successful were stark. As a single mother with a doctorate and two master’s degrees, she had to take jobs that paid less because cancer limited her energy. She took on enormous debt because she wouldn’t let her illness stop her from giving her children a private school education. Those choices started from physical and emotional hardship, then led to economic hardship.

Patients like you – and like my mother – have conditions you didn’t ask for, and your ability to keep a job and maintain economic stability isn’t just based on your talent or training, but also in your management of your conditions. Brought on by infection, age, genetic pre-disposition or unknown causes, these conditions factor into every choice, every decision—and in my mother’s case, which job to seek. We all make choices each day, but patients like you often have to choose between living well and just living.

One of the most important choices for patients like you is how to treat your disease. With your health care team, you try to make the best choice with the given information. The problem is information is scarce, untrustworthy or impersonal. That’s right, impersonal. What is a miracle treatment for one person could land another in the hospital. At PatientsLikeMe, we try to shine light on the information that can help each of you reach your best outcome. This is why we don’t just provide aggregate information, but allow you to access the profile of a person who is taking a medication to see if that person is “like you.”

The figure below speaks to the choices patients like you have to make about your treatments in a world with imperfect information. The chart depicts thousands of patient evaluations of efficacy and tolerability among major therapies across our 22 represented conditions. What jumps out immediately? That treatments for HIV and Parkinson’s are both more effective and easily tolerated than others out there for other diseases. Hundreds of millions of dollars have been devoted to research in those areas, and it’s paid off. Many believe Parkinson’s has a cure in sight, and HIV has, in less than 30 years, become a manageable chronic condition rather than a death sentence.

But what if you have other conditions? You are clearly making a choice between efficacy of the medications and the side effects that come with them. While aggregated data is great for directional insight, PatientsLikeMe is designed to let you drill down deeper. You can ask each person taking the treatment how it works for him or her. Why? Like everyone, you trust people like yourself who are going through or have gone through the same experiences. Only patients with similar situations can give you specific insight into what tradeoffs need to be considered when potentially trying a new medication. How will it affect my sleep? Is there daytime fatigue or “down time”? Can I operate heavy machinery? Will this treatment impair my ability to work in my profession?

These are the questions many of you are asking. These are the choices you make every day. My mother made her choices and has lived to see the fruits of her sacrifice. If we at PatientsLikeMe are going to help each of you answer the question, “Given my status, what is the best outcome I can hope to achieve, and how do I get there?”, then we have to continue to show the benefits of openly sharing information with each other. We have to excel at illuminating the real-world efficacy and risks of all kinds of treatments, and we have to help you connect with patients like you in a way that you get personal answers to your questions.

The more data you choose to share, the more we can all make the world of treatment information less imperfect and more personal. Simply stated, we’re all in this together.

At PatientsLikeMe, we strive to put the interests of you, the patient, first in everything we do.  After all, you are the customers of the healthcare industry, and you deserve to have a say about the products and services created for you.

Unfortunately, your needs and opinions often haven’t had the influence on the decision-making processes of insurance companies and pharmaceutical manufacturers.  Medical providers have often underserved you in favor of competing interests and more revenue.

The good news is times are changing.  Your voice, the patient voice, is coming to the forefront, where it should be.  Every day new companies approach us asking, “How can I connect with patients?  I need to know what they think and what they’re feeling.  I want to improve their health outcomes.”  These are the partners we want to work with because they are committed to using your insights to change the very nature of healthcare.  And their numbers are growing.

Here are two examples of how you have already impacted their decisions:

• How do we make this treatment easy for patients to use? A pharmaceutical manufacturer approached us with several options for a new drug’s packaging.  Over 650 of you spoke up in a survey, picking the most user-friendly choice based on your experience.  Guess which packaging the pharmaceutical company went with?  The one the majority of you liked.

• How do we help patients distinguish their symptoms? Another pharmaceutical company wanted to help patients like you understand your symptoms better so you could seek appropriate treatment.  By partnering with PatientsLikeMe, they found the solution.  58% (n=221) of patients like you surveyed said that the tools developed by PatientsLikeMe helped you better understand your symptoms and outcomes.  That insight has led to even more projects - and they really want to hear from you now!

Thanks to all of you who gave input in these surveys.  There will be more opportunities to be heard soon, so keep it up.  The world is finally listening!

Last November (2010), PatientsLikeMe was fortunate to have the opportunity to showcase our research at the world’s largest gathering of kidney and kidney transplant professionals.  The American Society of Nephrology (ASN) annual meeting is the premiere event platform for debuting revolutionary treatments, cutting-edge technological breakthroughs and top research findings.

PatientsLikeMe presented a poster about our Transplants Community to more than 12,000 physicians, scientists and other healthcare professionals from all 50 states and around the world.  The poster was very well received, and it allowed us to introduce our relatively young Transplants Community to a wide array of industry professionals, many of whom will pass the word on to their patients.

The poster we presented was elegant yet simple in its design.  Essentially, we compared the profile of our Transplants Community - now with more than 3,100 patient members - to published data from the United Network for Organ Sharing/ Organ Procurement and Transplantation Network (UNOS/OPTN) databases.  What did we find?

• About half of our kidney transplant patients knew the exact degree of tissue matching they had with their donor (referred to as HLA matching)
• The fewest HLA mismatches in kidneys came from deceased rather than living donors
• Within the living donors, the closest matches came from siblings, followed by parents and children

These preliminary findings set the stage for more advanced research.  Our goal is to answer a number of questions that are important to patients like you.  For example, who is able to keep their transplanted organs the longest, and why?  Which pre- and post-transplant medication regimens are the easiest on you?  And what is the best outcome you can hope to achieve - and how can you get there?

Thanks to all of our transplants members for contributing to this exciting research.  With your help, we look forward to presenting the answers to these questions and more at future ASN conferences.

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.

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.

PatientsLikeMe wants to wish all of our community members, Facebook fans, Twitter followers, blog readers and general company enthusiasts a very happy holiday season. Here’s a video from our leadership team to put a smile on your face.

Click on image to play