Affecting 5% of those with diabetes, type 1 diabetes occurs when the pancreas does not produce any insulin, a hormone that is needed to convert sugar, starches and other food into energy for the body. As a result, people with type 1 diabetes are “insulin dependent,” meaning they must take insulin in order to stay alive. This requires testing their blood sugar and taking insulin (via injection or an insulin pump) multiple times per day for the rest of their lives.
In contrast, type 2 diabetes patients do produce insulin. The problem is that it’s either in insufficient amounts, or the body doesn’t respond to it as it should. Thus, oral medications, supplemental insulin and/or lifestyle modifications such as diet and exercise may be prescribed to help control blood sugar levels and prevent hyperglycemia (high blood sugar), which is a major cause of serious diabetes complications such as blindness, kidney failure and amputations.
Here at PatientsLikeMe, there are currently 386 patients reporting type 1 diabetes, with 63% female and 37% male. Some of the most commonly reported symptoms include blurry vision, urinary frequency and excessive thirst, while some of the most commonly reported treatments are Insulin Glargine, Insulin Lispro and Insulin Aspart. Collectively, our members have submitted 45 evaluations of these three insulin types, sharing their experiences with dosage, side effects, cost, adherence and more.
Confusion about the differences between type 1 and type 2 diabetes – the latter being far more prevalent as well as strongly linked with the obesity epidemic – is a frustration for some of our type 1 members. As one member writes in our forum:
“As a type 1 diabetic, I am sick of people giving me advice or ‘cures’ that are for type 2. Almost all advertising in Canada is directed towards type 2 diabetics and how the disease is on the increase due to poor eating habits and obesity, weight problems, whatever. So when people hear I am a diabetic, I get: ‘Should you really be eating that dear, diabetics should not eat sugar.’ I look at them and think of the blood test I just did, which let me know that I needed some sugar.”
Indeed, as the JDRF states on its Myths and Misconceptions page, “While obesity has been identified as one of the ‘triggers’ for type 2 diabetes, it has no relation to the cause of type 1 diabetes. Scientists do not yet know exactly what causes type 1 diabetes, but they believe that both genetic and environmental factors are involved. Eating too much sugar is not a factor.” Also, as the patient quote above illustrates, patients with type 1 diabetes must always be on alert for insulin-induced hypoglycemia (low blood sugar), which requires an immediate intake of sugar to avoid fainting and other complications.
For a deeper glimpse into life with type 1 diabetes – which is diagnosed in more than 15,000 children and 15,000 adults each year in the US – tune in to our podcast interview with Sarah Taylor, a registered nurse and friend of the company who was diagnosed with type 1 diabetes at the age of nine.
To learn about other American Diabetes Month events, check out this great preview on the blog Diabetes Mine. And if you’re a diabetes patient, don’t forget to share your thoughts and stories at CallingAllTypes.com.
CAMBRIDGE, MA–(Marketwire - Aug 23, 2011) - Today, PatientsLikeMe’s Research Director, Paul Wicks Ph.D., was named a TR35 Honoree and spotlighted as Humanitarian of the Year by MIT Technology Review magazine, which profiled him in an in-depth article and video. The TR35 list recognizes the world’s top innovators under the age of 35, spanning medicine, energy, computing, communications, nanotechnology, and other emerging fields.
“Technology innovation is key to driving growth and progress in the areas of research, medicine, business and economics,” said Jason Pontin, editor-in-chief and publisher of Technology Review. “This year’s group of TR35 recipients is driving the next wave of transformative technology and making an impact on the way we live, work and interact. We look forward to profiling and working with these technology leaders each year, and watching their continued advancement in their respective fields.”
Dr. Wicks has been honored for his work in connecting patients to advance real-world understanding of their diseases. A neuropsychologist by training, Dr. Wicks first became involved in online communities through BUILD-UK, an online forum for people with ALS in his native United Kingdom. He joined PatientsLikeMe in 2006, where he has architected the website’s medical framework that is currently being used by 110,000+ patients with more than 1,000 conditions. The work of Dr. Wicks and the PatientsLikeMe research team has been published in dozens of scientific articles, including the most recent in Nature Biotechnology on accelerating clinical development that reported on the effect of lithium on ALS.
“Paul has made a real difference in thousands of patients’ lives and helped to build a system that is transforming healthcare,” says Jamie Heywood, Co-founder and Chairman of PatientsLikeMe (and MIT alumni). “All of us at PatientsLikeMe are thrilled that he has been honored with both prestigious awards.”
Chosen by a panel of expert judges and the Technology Review editorial staff, who evaluated more than 300 nominations, Dr. Wicks will receive his award at the emtech MIT 2011conference held at the MIT Media Lab in Cambridge, MA from October 18-19, 2011. All of the 2011 TR35 winners will be featured the September/October issue of Technology Review and online at www.technologyreview.com/tr35/.
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]
About Technology Review, Inc. Technology Review is an independent media company owned by the Massachusetts Institute of Technology (MIT). More than two million people around the globe read our publications, in five languages and on a variety of digital and print platforms. We publish Technology Review magazine, the world’s oldest technology magazine (established 1899); daily news, analysis, opinion, and video; and Business Impact, which explains how new technologies are transforming companies, disrupting markets, or creating entirely new industries. We also produce live events such as the annual emtech MIT conference.
An autoimmune disease affecting as many as 7.5 million Americans, psoriasis was recently in the headlines when reality star Kim Kardashian was diagnosed with the condition after developing red patches on her legs and torso.As she soon learned from her doctor during an episode of “Keeping Up with the Kardashians,” the disease is a lifelong one, and there is no cure.Her story also demonstrated the tendency for psoriasis to run in families, as her mother Kris Jenner also has the condition.
Like many people, Kardashian’s first reaction to the diagnosis was one of embarrassment and self-consciousness.Many people with psoriasis report that they have limited social activities, dating and the use of public swimming pools due to the often highly visible condition.In fact, a 2009 survey by the National Psoriasis Foundation found that nearly three-fourths of respondents say that psoriasis has had a negative impact on their quality of life.
The goal of Psoriasis Awareness Month is to highlight the life-altering impact of psoriasis and psoriatic arthritis and dispel the many myths surrounding it.With that objective in mind, here are a few quick facts to raise your knowledge.
Did you know that…
…psoriasis is a serious autoimmune disease that causes the skin to crack, itch and bleed?
…up to 30% of people with psoriasis will develop psoriatic arthritis, which causes pain and swelling of the joints?
…psoriasis is not contagious and cannot be transmitted through skin-to-skin contact?
…psoriasis often occurs with other serious health conditions, including diabetes, hypertension, heart attack, obesity and depression?
One of the best ways to better understand psoriasis is to get to know someone with the condition.Here at PatientsLikeMe, 318 patients report psoriasis, and 176 patients report psoriatic arthritis.Women are disproportionately affected, representing 69% of our psoriasis members and 82% of our psoriatic arthritis members.Across both conditions, one of the most commonly reported treatments is methotrexate (Trexall).
Learn more by checking out the profile of one of our psoriasis members today.Also, don’t forget about the Spotlight on Psoriasis and Psoriatic Arthritis Online Film Festival.Starting Tuesday, August 30th, anyone can watch and vote on submitted videos atwww.psoriasis.org/pam.
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.
PatientsLikeMe was recently highlighted in three national media outlets:CBS News, BNET and The Washington Post.See below for an excerpt of what each said about us.
CBS News Health 2.0?7 apps and sites that may save your life. “With information on more than 500 conditions, the crowdsourced research site [PatientsLikeMe] provides treatment and symptom reports, as well as a forum to help patients find social support.More than 100,000 people have created profiles on the site to connect with other patients.”
BNET Want a strong digital strategy?Stop focusing on technology. “Digital Marketing Strategy #10:Gain customer insight. Drug maker UCB helped launch an online community for epileptics within PatientsLikeMe, in order to gather data about comparative effectiveness of different therapies, understand quality of life for patients, and measure drug safety and side effects.”
The Washington Post The do-it-yourself healthcare revolution gets a boost. “With PatientsLikeMe.com, patients now have an online social network for interacting with others who have similar symptoms, all of whom are seeking the same cure. The goal is to be able to crowdsource a cure by pooling together the data about their symptoms and sharing information about the side effects from treatments in an informal community.”
For all media coverage of PatientsLikeMe, visit our Press page.Or set up your own Google RSS feed for PatientsLikeMe.
Recently, PatientsLikeMe Chief Marketing Officer David S. Williams III had the opportunity to participate in a podcast interview with the industry magazine PharmaVOICE.Along with Bonnie Brescia, a Founding Principal of BBK Worldwide, he fielded questions about how the new alliance between our two companies can both enhance and expedite the clinical trial recruitment process.Listen in to hear what each had to say about what this partnership means and what we hope to achieve together.
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.
Posted by Lori Piscatelli Scanlon | April 19, 2011
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!
Posted by Lori Piscatelli Scanlon | April 13, 2011
Patients Unveil Top Reasons Not to Share Health Information
CAMBRIDGE, MA–(Marketwire - April 13, 2011) - According to a new PatientsLikeMe® Poll, almost one in three (29%) patients have withheld certain health information from their doctor. Of the 4,364 poll respondents, all of whom are members of PatientsLikeMe’s online health data-sharing community (www.patientslikeme.com), nearly half (47%) indicate that they have chosen not to share certain health information with an employer, while 14% have withheld information from insurance companies.
“Here’s a population of arguably the most open patients, who share detailed data about everything from their treatments to their sex lives on PatientsLikeMe, and yet some of these individuals feel uncomfortable sharing with other stakeholders in healthcare,” says Jamie Heywood, co-founder and chairman of PatientsLikeMe. ”If we’re all going to make healthcare better, then it’s time we really understand what’s keeping patients from sharing information. That insight is crucial to improving the system.”
In their poll responses, patients also identified some of the reasons why they chose not to share their health information. Patients’ unwillingness to share certain information with doctors is driven by more emotional triggers. Almost half (44%) say they didn’t tell a doctor about something related to their health because they “didn’t want to be lectured/made to feel bad;” second to that was fear of embarrassment (36%). What aren’t they sharing with doctors? Respondents said symptoms (41%), lifestyle information such as “diet, alcohol, exercise, or smoking” (39%) and failure to take a prescribed medication (29%).
Alternatively, the majority of patients who withheld information from an employer cite more practical implications. Sixty six percent (66%) of patients indicate the top reason as being “none of their employer’s business,” but nearly half (49%) say they are afraid of losing their job and about one-third (35%) are afraid of not getting a promotion. Finally, the individuals who kept certain health information under wraps from their health insurance companies report they did so out of fear of losing coverage (39%), fear of not having a specific treatment or procedure covered (39%) or fear of premiums going up (25%).
NOTE TO EDITOR: All poll results must be sourced as originating from PatientsLikeMe®.
Poll Methodology Between March 22nd and March 29th, PatientsLikeMe invited all members who had been active on the website within the past 90 days to participate in the PatientsLikeMe® Poll; 4,364 members completed the survey. Mean age of respondents was 49 years (SD 12, range 13-84).
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]
Posted by Lori Piscatelli Scanlon | April 12, 2011
In today’s news…
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BRUSSELS, BELGIUM and CAMBRIDGE, MA–(Marketwire - April 12, 2011) - In a survey amongst people with epilepsy in the U.S. who have joined PatientsLikeMe®, the leading health data-sharing website for patients, respondents indicate that better seizure understanding and improved adherence are key benefits of using the site. The majority of respondents (55%) indicate a better understanding of their seizures, while one in four (27%) report improved adherence to treatment as a result of joining the PatientsLikeMe epilepsy community. When asked about their social interactions with other patients, one in three respondents (30%) said they did not know a single other person with epilepsy before joining the site; 63% of these said they were now communicating with one or more patients on the site.
The complete results from this survey of 221 epilepsy patients are being presented this week at the annual meeting of the American Academy of Neurology, in Hawaii, U.S. (April 9th-16th). In early 2010, PatientsLikeMe and UCB first invited U.S. epilepsy patients to share their seizure experiences, symptoms and treatments through the website; there are more than 3,600 members to date. UCB receives annonymized, aggregated data from the PatientsLikeMe epilepsy community…. >> Click here to see the full news release.
Posted by Lori Piscatelli Scanlon | April 11, 2011
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.’”
Posted by Lori Piscatelli Scanlon | March 30, 2011
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!
Posted by David S. Williams III | January 12, 2011
2010 was a strong year for business development at PatientsLikeMe. Our goal was - and continues to be - to align patients’ needs with industry interests in order to maximize interaction between the two. Here are a few of our successes and challenges over the year.
Successes
1. New Partnerships, New Communities
In the first quarter of 2010, PatientsLikeMe launched two communities with corporate partners. UCB helped us develop our Epilepsy Community, while Novartis partnered with us to create our Transplants Community. Both communities have grown to more than 3,000 patient members and are now the largest of their kind in the world.
As with all of our partnerships, we made sure the focus is on the patient experience. For example, what are your perceptions about the medications you take? How do you see these treatments impacting your quality of life? Getting quantifiable data on such questions can help our partners understand how they can help patients like you improve your health outcomes.
2. Enhanced Services for Partners
When we create products and services for our corporate partners, it’s with a single objective: to amplify the patient voice. As a result, healthcare companies who wish to improve health outcomes have the information to improve their products and services accordingly. In 2010, PatientsLikeMe further heightened the voice of patients by enhancing two existing products.
PatientsLikeMeListenTM and PatientsLikeMeLandscapeTM
These complementary services help measure both the frequency and sentiment of treatment discussions in our community forums. In 2010, we added functionality that allows our partners to see a longitudinal comparative view of patient sentiment (using PatientsLikeMeListenTM) as well as identify discussion topics that are rising within a forum (using PatientsLikeMeLandscapeTM ). Both products help to elevate patient concerns and bring their importance and relevance to life for industry partners.
Challenges
As a for-profit health company that enables data sharing by patients, we knew we’d face our share of challenges. 2010 was no different. Many groups, including patients, nonprofits, government and industry, had valid concerns about working with PatientsLikeMe because of our Openness Philosophy.
1. Guidance on Industry Interaction with Social Media
One of the main (and valid) concerns our industry partners express is that the Food and Drug Administration has yet to deliver clear guidelines on how to interact with social media. Dipping their collective toes into the social media wave pool is perceived as risky because the FDA levies severe penalties for companies attempting to directly sell to patients.
PatientsLikeMe has taken a leadership role in addressing this concern by further developing our PatientsLikeMeLeadersTM service. After investigating all privacy and regulatory conditions, PatientsLikeMe has created a fully compliant solution for direct industry-patient feedback in an online forum that we moderate. Now you as patients will be heard directly by those making decisions on what treatments are developed and how they are introduced, while our partners can learn what patients like you want and need - without fear of non-compliance.
2. Being Open About the Data Scraping Incident
In May 2010, we discovered that a major media monitoring company had created a patient account and automatically downloaded forum posts in order to add data to their sentiment analysis client service. Not only is that a violation of our User Agreement (”You may not use any robot, spider, scraper, or other automated means to access the Site or content or services provided on the Site for any purposes.”), but it reduces the trust patients have with our site.
We dealt with this challenge openly by disclosing our discovery of this “data scraping incident” the day it occurred. We sent a message informing all patient members, and about 200 patient members left the site as a result. In October 2010, The Wall Street Journal included PatientsLikeMe in its special series on the benefits and risks of sharing health information online, with the practice of data scraping highlighted as a risk to patients. We welcomed this article coverage and continue to engage with other leaders in this ongoing discussion.
Since our PatientsLikeMeListenTM product measures sentiment of discussions in our forums, we reminded our members about this similar service. We will continue to inform and educate our members about how we conduct business so there are no surprises.
Summary
In 2010, we continued to grow our patient communities and further confirmed that the success of our business lies in aligning patient and industry interests. In fact, we have recently been cited by the Board of Innovation as one of 10 Business Models That Rocked in 2010.
Because of the sensitivity of sharing health data online, however, we remain upfront, open and transparent about our business practices so that patients like you can be informed participants in your health, medical research and the development of effective treatments. Happy 2011!
Posted by Lori Piscatelli Scanlon | January 7, 2011
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 PatientsLikeMeInMotionTM 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 PatientsLikeMeinMotionTM 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 PatientsLikeMeOnCallTM (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, PatientsLikeMeOnCallTM is ready to bring more content to all of our listeners in 2011. Thanks for stopping by and listening!
Along with PatientsLikeMeOnCallTM, 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.
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!
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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Patients Unveil Top Reasons Not to Share Health Information
