Last November, we shared our takeaways from TEDx Cambridge, a one-day event featuring 30+ speakers and lots of Ideas Worth Spreading (TED’s mission). The theme for this particular gathering was “Thrive.” How can we as individuals – and communities – not just survive but thrive?
One of the speakers to take a crack at that question was PatientsLikeMe Co-Founder and President Ben Heywood, who talked about the story behind PatientsLikeMe. In addition to sharing how it all began with his brother Stephen’s diagnosis with ALS, and what PatientsLikeMe is trying to do (“a revolution of openness”), Ben focused on how we can thrive as a company against big expectations – both external and internal.
Tune in to the video below to find out just that. Congrats to Ben on an inspiring talk – not to mention his standing ovation!
The holidays are a time for thinking about everything you hope and wish for in the coming year. They’re also a time for appreciating everything you already have. As our season’s greetings to you, we wanted to share a wish expressed by each member of our management team.
“I wish for every patient and family dealing with illness to know that they are not alone and that we are all in this together.” –Ben Heywood, President and Co-Founder
“I hope Santa brings you all your health data and that you will share it with other patients like you!” – Paul Wicks, PhD, Research & Development Director
“I wish for people to have the most happy, healthy, and joyous holidays filled with the unparalleled love from those who matter in their lives.” – David S. Williams III, Chief Marketing Officer and Head of BusinessDevelopment
“My wish for patients everywhere is that they continue to learn about their chronic conditions and keep updated on the latest treatments from multiple sources.” – Robert Palladino, Chief Financial Officer
“All of us at PatientsLikeMe wish you and those you love a holiday of joy and grace.” – Jamie Heywood, Chairman and Co-Founder
Patient Experience Manager Kate Brigham and I attended TEDx Cambridge last week, a one-day event full of thought-provoking and inspirational talks about Ideas Worth Spreading (TED’s mission). The participants didn’t want to just survive, they wanted to Thrive, which was this year’s theme. Speakers, including our President and Co-Founder Ben Heywood, enlightened the crowd with how we can help ourselves in small ways and inspire others in the process.
Throughout four sessions packed with 30+ speakers on the topics of Mind, Body, We, and Beyond, many shared how people can improve themselves individually, by being part of a community, and by giving back to others. Some advice is expected—sleep more, drink less caffeine, eat more vegetables, try yoga—but other points were more novel.
For example, we were encouraged by Matt Daniell to try something, anything, for a month as “time becomes much more memorable when undertaking 30 day challenges.” Using research on the effects of body posture on hormones, Amy Cuddy shared that doing a power pose for just a few minutes (like putting your feet up on your desk) is minimal effort, but can benefit your brain as well as others’ perception of you. (Note: she recommended we put our feet up in private, not in a meeting!) One of the lessons that seemed to resonate most was from Priya Parker, who encouraged the audience to not worry about keeping all options open—that it’s FOMO (the fear of missing out) and FOBO (the fear of better opportunities) that contribute to many people’s anxiety and stress.
In addition to Ben talking about PatientsLikeMe, other speakers shared the importance of connecting people with others like them, making data more accessible and empowering patients to take control of their health. Greg Epstein and Jesus Gerena, although in different fields (a Humanist Chaplain and Activist, respectively) arrived at the same conclusion: that when people come together and help one another, the entire group is empowered and everyone benefits.
Our ears also perked up when Sandy Pentland, a social scientist at MIT, discussed how important data is and stated that “personal data is the new oil of the Internet.” Further affirming the importance of data, John Sheffield talked about how he wants to make sure that genomics analysis is accessible, repeatable and shareable. He’s found in his field of data architecture that’s it’s all about connections with others, a point of view we certainly share!
One story that perhaps applies most to what we’re doing here at PatientsLikeMe was presented by Hugo Campos, a heart patient who is literally on a quest to liberate data from his own heart. Although he has a high-tech cardiac defibrillator, he doesn’t have access to the data collected by this device. We’re with you, Hugo: “We all have the right to our own health information!”
At PatientsLikeMe, we help people Thrive by connecting patients so that they can share their experiences, find others like them and, together, learn how to best improve their health. From disease-specific outcome scores to our Quality of Life survey and InstantMe tool, we offer all sorts of ways to monitor your health and assess the impact of various treatments and interventions.
How do you help yourself and others Thrive? Share your thoughts in the comments section. Also, stay tuned for the video of Ben’s talk, which we’ll share as soon as it is released.
“I got this call from my brother Stephen, and he said the news doesn’t look good.At that point, he’d been through enough processes to know what that meant – he had ALS.So I began this journey with my brother and my family…. We were thinking there had to be a way to make this about the patient.But it started like everyone else. You get that phone call, and your life changes.” - Jamie Heywood, Co-Founder
Recently, we launched a new and improved About Us page that included a short video about our company history.Now, we’re pleased to unveil a longer, more in-depth video that allows you to hear our founding story from four PatientsLikeMe executives and learn what drew each of them to become a part of our groundbreaking concept.
Tune in below to hear where it all started and why, five years later, we’re committed to continuing the journey we’re all on – as a company, as patients and as family members of those affected by disease.
You can also watch this insightful piece (~15 minutes) in three smaller segments: Chapter 1, Chapter 2 and Chapter 3.
“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.
“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.
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-FoundersBen andJamie Heywood, Chief Marketing OfficerDavid S. Williams III and R&D DirectorPaul 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.
We recently sat down with our executive team here at PatientsLikeMe in our first-ever roundtable-format podcast. In this PatientsLikeMeOnCallTM interview, we ask Co-founders Ben and Jamie Heywood, Chief Marketing Officer David S. Williams III, and R&D Director Paul Wicks PhD to discuss why our recent series themes are so important to the history and future of PatientsLikeMe.
Blog Series Themes:
“Share and Compare” - where you learned more about how and why patients like you are sharing their health information to put their experiences in context.
“One for All” - including visualizations on how one member of a community can be the catalyst for a universe of unparalleled dialogue and support.
While discussing how patients can continue to drive the health care process, they also help us preview this week’s discussion called “Treat Us Right.”
Treat Us Right
In this series, we focus on how you can see if your treatment is right, just by the information shared by patients like you; and how important your shared information is to research efforts - both for academia and industry to learn how they can help each of you make good choices about your treatments. We’ve heard you tell industry to “Treat Us Right” and we will talk more about it this week.
We kick off “Treat Us Right” week tomorrow with Research Scientist Catherine Brownstein, MPH, PhD describing why it’s critical to compare the PatientsLikeMe communities with the general population of the diseases to begin to assess the validity of treatment outcomes reported on the site. Stay tuned.
Want to follow our blog? Check out the sidebar to the right to sign up for a RSS Feed, email reminders or to follow us on Twitter and Facebook. (And don’t forget to “Share This” any time you see content you like).
PatientsLikeMeInsightsTM - our query engine that dives deeper into the data (e.g., weight gain in Cymbalta/Lyrica patients)
As I note in my presentation, there are a lot of caveats to what I have up on the screen. We as an organization believe in being careful about throwing terms around like “evidence.” So what you see in this video is not evidence - it’s the first look at some of the data we have to work with and what we can do with it as we continue on our path to create evidence. With no uncertain terms, though, what you see here is the beginning of the insight we can generate around clinical outcomes of patients and the real-world impact of treatments.
In response to the Wall Street Journal article published last week, we’ve had a lot of great discussions about the role of honesty and transparency. Transparency is about you - members of the PatientsLikeMe community - knowing how we make money and what we do with the data you’ve entrusted to each other and PatientsLikeMe.
To start, the characterization as villain is nicely hyperbolic for a headline, but inaccurate. Villains are dishonest. As a company, we strive to be honest and transparent - both are key parts of our Core Values as an organization. To that end, let us dig in on a few of your recent follow-up questions:
Does PatientsLikeMe sell our identifying data (like name, photo, bio, etc.)?
No. We’ve asked for a correction in the Internet Evolution article because their statement about scraping the names you use to sign up for the site is incorrect. In the BNET article, the author cited our Privacy Policy, which indicates what data patient members can share on their health profiles at PatientsLikeMe. This is not the same as the data we sell. In addition to linking our partners site right off our homepage (where we list out the products sold to partners), we also call out “how we make money” on the front page. Part of this FAQ was cited, but the very important point about “personally identifiable information” is below:
How does PatientsLikeMe make money? We take the information patients share about their experience with the disease, and sell it in a de-identified, aggregated and individual format to our partners (i.e., companies that are developing or selling products to patients). These products may include drugs, devices, equipment, insurance, and medical services. We do not rent, sell or share personally identifiable information for marketing purposes or without explicit consent. Because we believe in transparency, we tell our members exactly what we do and do not do with their data. (Read more)
Is this a “privacy scandal”? To us, it’s not a discussion about whether or not health information should be private. (Don’t get us wrong - that’s an important discussion too, but we’re pretty clear on where we stand on that - see our Openness Philosophy). The issue here is that Nielsen was not given consent of the patients, nor PatientsLikeMe, to scrape information from our site. As we’ve said before, we believe this scraping incident was a violation of our User Agreement and a violation of patients’ trust.
Isn’t PatientsLikeMe doing the same thing as Nielsen? In addition to our User Agreement and Privacy Policy, we also have a moral obligation to our communities to do the right thing. In this case it means: 1) having this dialogue openly and honestly; 2) being selective about the projects we work on and our partners; and 3) contractually obligating our partners not to ‘re-identify’ our patients with our data or other data (which would mean a pharma company would be taking on liability using a service like PeekYou in conjunction with PatientsLikeMe data).
Our site wouldn’t exist if we had to “persuade” you, the patient, to share your data. Many of you find value in sharing; value in that level of openness. What you should expect in return is a level of transparency about what we will and won’t do with your information. We hope we do a good job of providing that transparency. What do you think?
Julia’s piece includes details regarding how this incident happened, how we (and you) responded and more. We are very excited about this article. Having a rigorous debate about transparency, openness and privacy is critical to us achieving the trust we want to have with you, our patients.
What Nielsen did was clearly a violation of our User Agreement. However, we believe this incident (and this article) have spurred an important ongoing discussion about what is right, just and appropriate regarding how companies operate in this new networked world. As I said to Julia, this is a new frontier. We also believe there’s a lot for everyone to learn from this experience, especially around how to put patients first.
The following message was sent this morning to all members of PatientsLikeMe. Please read what we have to say about openness, sharing and its privacy implications and join the conversation.
****
Dear PatientsLikeMe Members,
What are the privacy implications of sharing in this open, online community? We talk a lot about this and, as a company, strive to be transparent about the risks and rewards to sharing here. Two recent events have prompted me to reach out to all the members of PatientsLikeMe to ensure we all understand openness, sharing and its privacy implications.
The first event happened last month when a patient asked us to remove all the data on his/her profile from the system. The member wrote:
“The reason I’m leaving is I feel I didn’t fully understand the privacy impact of having all my health information for practically anyone in the world to see.”
We rarely receive a request like this, but since receiving this one, I have thought about it every day. We do not want anyone to be surprised by the impact of sharing data on PatientsLikeMe. We believe in openness, but we also want people to knowingly make the choice to be open with their health information.
This brings me to the second event. Recently, we suspended a user who registered as a patient in the Mood community. This user was not a patient, but rather a computer program that scrapes (i.e. reads and stores) forum information. Our system, which alerts us when an account has looked at too many posts or too many patient profiles within a specified time interval, detected the user. We have verified the account was linked to a major media monitoring company, and we have since sent a cease and desist letter to its executives.
While this was not a security breach, it was a clear violation of our User Agreement (which expressly forbids this type of activity) and, more significantly, a violation of the community’s trust. Your Account Information (e.g. your names and emails) was NOT in danger of being stolen. It is likely that the forum information that was “scraped” would be sold as part of that company’s Internet monitoring product. In fact, we sell a similar service, PatientsLikeMeListenTM, to our clients so they better understand the voice of the patient.
What does this all mean to you? What can you do?
We recognize that people write very personal things in the forum and often use real names. In any growing network of tens of thousands of members, there is no way to ensure that information you share in the forum or on your profiles will not be read by others. Know that the information you enter in our system is shared (unless we tell you it is private, like full name and email in your Account Information). It can and will be read by other patients, the PatientsLikeMe team, researchers, and others that use PatientsLikeMe, including our partners with whom we share de-identified data.
Please weigh the benefits of sharing and the amazing value you all create in helping each other versus the risks of people, unknown to you, reading your posts. Your input helps PatientsLikeMe and our partners learn about your disease and make better products to meet your needs.
Learn and understand why we value openness. If you haven’t, please read the Read This! FAQ. If you want to know how we make money, you can take a look at this FAQ or go to our Partners Page and know that we sell your data and insights (but not your identity) to our customers.
Consider the value of being part of the PatientsLikeMe community and make the right risk decisions for yourself. Together, we can really change the way diseases are treated and managed by putting you, the patients, in the center of healthcare. We can hold companies accountable for the strengths and weaknesses of their products and also help make those products better - but that requires openness and that is your choice.
We welcome your comments and questions and we love feedback. This has been posted on our blog, which is a good place to dialogue, as is the forum.
On behalf of the entire PatientsLikeMe team, I want to thank you for being part of our communities and sharing your experiences.
Sincerely, Ben Heywood
President and Co-founder, PatientsLikeMe
The PatientsLikeMe team has been traveling around the globe recently talking about the power of real-world patient data in changing healthcare. You may have heard about our executives at industry conferences, government hearings, or even on TV. Highlights below.
Last month, PatientsLikeMe Co-founder and President Ben Heywood was on Fox Business News talking about how industry is engaging directly with patients and tuning into the “unvarnished truth” patients are sharing about their real-world disease experiences.
Earlier in March, we launched our PatientsLikeMeOnCallTM podcast series to bring to you our leaders’ perspectives on topics that impact you, the patient, and the healthcare industry as a whole. We kicked off the series with Ben’s interview regarding Fast Company recognition. You can check out that one and the rest of our podcasts on iTunes or click on the links below to start listening to a specific interview. As podcast host Aaron Fleishman says, “thanks for stopping by and listening and we’ll talk to you next time.”
Listen | Ben Heywood (Co-founder, President) answers questions about the launch of our new organ transplants community and our collaboration with Novartis
Listen | David S. Williams III (Chief Marketing Officer) shares industry best practices in using social media for clinical trial recruitment (recently presented at the CHI SCOPE conference)
Listen | Paul Wicks Ph.D. (R&D Director) discusses nexus of personalized medicine and information technology (highlights from his presentation given at a Personalized Conference event by ASU, Mayo Clinic, AAAS, FDLI)
Listen | Jamie Heywood (Co-founder, Chairman) visits “on call” to talk about the impact of real-world experience on drug safety
Listen| Sally Okun RN (Health Data Integrity Manager) gives her perspective on improving patient engagement and fostering patient-provider partnerships through tools like the Doctor Visit Sheet (highlights from her presentation at the Patient E-Centered Health event by The Stevens Institute of Technology)
Watch | Maureen Oakes (Product Manager) shows you cool new website functionalities making their debut with the new transplants community
Watch | Paul Wicks Ph.D. (R&D Director) talks about the value of patients measuring quality of life through online patient-reported outcome
Posted by Lori Piscatelli Scanlon | February 18, 2010
It’s been an exciting few months for PatientsLikeMe. Here’s a quick recap…
Today, Fast Company released its annual ranking of the 50 Most Innovative Companies in the World. PatientsLikeMe made #23 on the list alongside big league companies like Facebook, Disney, Novartis and Amazon. PatientsLikeMe was also named the second most innovative company in healthcare, behind powerhouse General Electric (GE). Read our news release about it here and the magazine article featuring one of our MS patients. To commemorate this honor, we’ve interviewed our President and Co-founder, Ben Heywood, in our first-ever PatientsLikeMe podcast (hosted by our own Aaron Fleishman). Listen in!
Speaking of innovation, what do Bill Gates, Al Gore, Steven Hawking, Goldie Hawn, David Blaine and PatientsLikeMe Co-founder Jamie Heywood have in common?All of these innovators have graced the stage at a TED event. A nonprofit that brings together innovative people from “Technology, Entertainment and Design,” TED’s mission is to simply spread ideas. Isn’t that another way of saying “share?” We do love that concept. Here’s Jamie at TEDMED (the healthcare-focused TED event) sharing our vision on the future of medicine in his presentation, “The Big Idea My Brother Inspired.”
Finally, we’d like to give a shout out to some of people who have interviewed us since the start of 2010. In the February 8th issue of TIME magazine (“Group Therapy”), reporter Bonnie Rochman caught up with Jamie to get his perspective on the power of online patient communities. Later that same week, Ben Heywood sat down with Staci and Steve from WAAM’s My Great Kid Radio show to discuss sharing, openness and the remarkable power of technology. He also spoke with Ryan McBride from Xconomy about the growth of PatientsLikeMe as a business, so be sure to check it out. Lastly, we just posted a blog interview with reporter and author Thomas Goetz regarding his newly released book, “The Decision Tree” (featuring PatientsLikeMe and our community members).
Stay tuned for more 2010 interviews, announcements, and podcasts right here on our blog.
At PatientsLikeMe, people with every type of condition are coming together to share their health experiences, find patients like them and learn how to take control of their health. The result is improved care for patients as well as an acceleration of real-world medical research.
Stay tuned to our blog for the latest happenings with our company, our patients and our mission of opening up the healthcare system.
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