In June, we told you about our new partnership with BBK Worldwide, a pioneer in healthcare communications.Now, we’re excited to report that our first outreach project together is kicking off.
In preparation for American Diabetes Month in November, PatientsLikeMe and BBK Worldwide announced today the launch of a new online diabetes health movement entitled “Calling All Types.”This innovative social health initiative encourages people with type 1 and type 2 diabetes to share their real-world experiences and help raise awareness of the disease, which affects 25.8 million children and adults in the US (or 8.3% of the population).
Are you a diabetes patient?Share your thoughts and stories at CallingAllTypes.com.Within seconds, social media outlets including Twitter, Facebook and YouTube will pick up and share your words across the Internet.The goal is to create instantaneous viral awareness that will inform the public, including policy makers and health professionals, about the real toll diabetes takes on individuals and families. (Check out the video below to learn more.)
In addition to rallying supporters at CallingAllTypes.com, the campaign is focusing much of its initial awareness-raising efforts in Atlanta, Georgia, where diabetes prevalence exceeds the national average by a full percentage point.“We are incorporating a “take a community by storm’ approach,” says Bonnie A. Brescia, founding principal of BBK.For each of the first 10,000 visitors to post a comment at CallingAllTypes.com during November, the campaign will donate $1 to the Atlanta chapter of the American Diabetes Association.
So if you’ve got something to say about diabetes, the fastest-growing chronic disease in US history, don’t hold back.Spread the word today at CallingAllTypes.com.Then, if you haven’t already, join the diabetes patients at PatientsLikeMe who are coming together to share experiences, find others like them and take control of their health.
“You’re the patient who’s taking the medication.But industry can act almost like a friend who’s walking with you.And that relationship has never been the case in healthcare.Never.” – David S. Williams III
Last week, we kicked off our latest video series with an interview with President and Co-Founder Ben Heywood about the “long road” we’re all on together to change the way healthcare works for patients like you.
This week, Chief Marketing Officer and Head of Business Development David S. Williams III offers his perspective on how our industry partners can take part in this collaborative journey.Listen in to hear his thoughts on a new type of patient-industry relationship that is now possible thanks to social media.
Curious what other parties will share this “road” with us?Stay tuned for next week’s video interview with another member of the PatientsLikeMe executive team.
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 | 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!
In yesterday’s post, we looked at some of the ways members of the PatientsLikeMe community are connecting with other patients and the value they are getting from it. Today, we’ll highlight how one person can make an enormous difference and inspire you with her ability to connect with others.
One method of reaching out to another member on PatientsLikeMe is by leaving a comment on their profile page. Often, you exchange comments to inquire about specific data on someone’s profile or to thank them for sharing. However, one of the most common uses of the comments functionality is for existing members to welcome new members to the community. This is has been affectionately coined the “Welcome Wagon,” and it is most prominent in our MS community. Today, more than 71% of members in that community get a comment within the first 2 days. Receiving a comment from a veteran PatientsLikeMe member when you first join the site is a great way to “welcome” you aboard and make you feel a part of the community.
A large part of the effectiveness of the MS Welcome Wagon can be attributed to a member named Diamondlil58. Of the 150,000 comments that have been left on PatientsLikeMe, Diamondlil58 has left a staggering 16,000 of them, addressed to over 15,000 different members. The graph above shows just how extensively Diamondlil58 has connected with the community through commenting. In the graph, the dots represents patients in our MS community, and the lines represent a comment between them. Diamondlil58 is the large green dot near the center. Notice how she has touched both the inter-connected network of patients (on the right), as well as sent out a huge number of comments to others who aren’t yet as well-connected (the moon-like diagram on the left). A large portion of these comments were part of the Welcome Wagon.
While the Welcome Wagon was started in the MS community, it has definitely caught on in other communities. Here is a look at how Babsie, an active member in our Fibromyalgia community, has reached out to welcome new members. Like Diamondlil38, Babsie has helped create a network of dialogue and connection between patients like you.
It’s inspiring to see how one person can touch so many. Members often tell us how beneficial it is to have a way to find “patients like me.” (In fact, we cited a few examples yesterday from our research study that shows just how valuable that can be to one’s health). However, that “find” functionality alone is not what makes this community what it is today. It’s the people who are using it. It’s the people who are willing to openly share with one another; the people who reach out to make those connections (sometimes initiated by beacons, like Diamondlil58); it’s people like you who make the most of being a member of PatientsLikeMe.
The next two blogs in this series will include interviews with Diamondlil58 and Babsie. Stay tuned as we climb aboard the Welcome Wagon and hear what they have to say.
PatientsLikeMe is dedicated to building a platform for the open sharing of personal health data. So far, our community of patients have shared over 600,000 outcome surveys, 300,000 treatment histories, and 2.3 million symptom reports. We believe this enormous collection of health data will dramatically improve how patients manage their conditions.
But there are more benefits to joining a community of patients like those on PatientsLikeMe than just sharing data: the social support from interacting with other patients has a real effect on improving patient outcomes. In a recent study published in the Journal for Medical Internet Research (JMIR), our research team found that nearly half of survey respondents (n = 559, 42%) agreed that the site had helped them find another patient who had helped them understand what it was like to take a specific treatment for their condition. Furthermore, the survey shows that those patients on PatientsLikeMe who make close relationships with other members receive significantly more benefits from those who do not.
So it is worth taking a moment to look at just how extensive the social connections are on PatientsLikeMe, and how many patients have reached out to other patients and helped improve their lives.
There are many ways to connect with other patients on PatientsLikeMe, ranging from communal conversation in our forums to direct one-on-one personal messages. While some of this dialogue is centered around sharing of health information and experiences, a part of it is purely meant as conversational discussion about everyday life. All of these interactions are important, because they help tie a community together. Here’s a glance at some of the ways you’ve connected:
Forum
You’ve created 1.2 million posts composed of 94 million words about 86,048 topics
21,865 of you have created at least one post, and 54,839 of you have viewed at least one post
You’ve marked posts as “helpful” 1.2 million times
Personal Messages
25,062 of you have sent a total of 751,668 messages
723 of you have individually sent over 100 messages
Patient Profile Pages
You’ve viewed our 80,000 patient profile pages over 15 million times
11,874 of you have left over 156,196 comments on other members’ profile pages
(Note: numbers are across all communities.)
While these numbers show just how much sharing has been going on, the following graph illustrates what the connections are like between our members. In this graph, the dots represent patients, and the lines between them connect any two patients who have shared at least 5 personal messages together. Note how many patients are interconnected. By reaching out to one another for support, conversation, data sharing and more, you’ve created a universe of dialogue that has never existed amongst patients like you.
Click for full-sized version. A graph showing personal messages made between some of the patients on PatientsLikeMe. The dots represent patients, and a line represents at least 5 personal messages between them.
Moreover, what you’re sharing with each other through these various connections represents the largest data set of its kind linking conversations to outcomes and overall health experience. This week on the blog, we’ll delve into some of these connections that have been spurred by some of our members. However, we also want to recognize that even the silent contributors (those connecting behind the scenes or outside of the forum spotlight) are as much to thank for this open network. All for one and one for all.
(About the title image. This graph shows all comments made between Epilepsy patients on PatientsLikeMe. The dots represent patients, and the lines between them represent at least one comment made. Note the highly connected network of patients in the center. Click for full-sized image.)
Posted by Lori Piscatelli Scanlon | January 26, 2010
Pharmaceutical, Social Media Leaders Examine Real-World Impact of Epilepsy
CAMBRIDGE, MA and ATLANTA, GA — (Marketwire - January 26, 2010) – Today, PatientsLikeMe, the leading online community for people with life-changing conditions, and biopharmaceutical company UCB open the doors to a free online community for people living with epilepsy in the U.S. Focused on learning from patients’ real-world experiences, the online community allows members to create profiles that record and share their treatments, symptoms, as well as seizure type, frequency and severity.
“As a patient-centered company, we are constantly seeking innovative ways to enhance and adjust our approaches to meet patient needs,” says Iris Loew-Friedrich, Executive Vice-President, Chief Medical Officer, UCB. “We believe this community will be a source of information that will allow us to better understand people living with epilepsy and may help us design clinical programs that incorporate real-world patient needs and experiences in a measurable way.”
Among the research being conducted, PatientsLikeMe and UCB are analyzing anonymized data shared by participating epilepsy patients, with their consent, via an online clinical survey built into the site to measure patients’ quality of life (including cognitive, social and physical function). Completed by 60 patients testing the site since mid-November, initial survey results show the patients are most concerned with the cognitive impact of living with epilepsy (such as lack of concentration or memory loss).
Adds Ben Heywood, co-founder and president of PatientsLikeMe, “Patients are telling us that, in addition to seizures, there are many more significant aspects to the disease. It’s this type of real-world data and insight about epilepsy that is going to change how this disease is treated.”
To better understand the impact of medications that treat epilepsy in the real world, PatientsLikeMe and UCB are also taking the lead in implementing a drug safety program within this patient community. The program is designed to capture and report adverse events associated with approved UCB epilepsy therapies to the U.S. Food and Drug Administration (FDA).
Last June, PatientsLikeMe and UCB announced this strategic partnership to build an online community for people living with epilepsy, which debuts today at www.patientslikeme.com/epilepsy/community.
You can see the full news release from PatientsLikeMe and UCB on Marketwire.
A few weeks ago, I was invited to present on behalf of PatientsLikeMe at the Arthritis Foundation workshop held in Newport, RI. The presentation was on how to “harness new media for patient advocacy” - the same as what I presented at a workshop for non-profits in northern New England in August. This time the audience included non-profits in the southern half of New England. Among those in attendance were representatives from organizations that mean a lot to us, and our patient communities, including regional branches of the American Parkinson’s Disease Association, CFIDS & FM Association, and the Epilepsy Foundation.
One of the highlights for attendees was an impassioned keynote speech by Rep. Patrick Kennedy (pictured above with me and my wife Emma) who advocated the use of the web to support mass organization of patients with serious and chronic illnesses to accelerate research and improve standards of care. We couldn’t agree more. It’s exciting and validating to know influential decision-makers are recognizing the potential of communities like PatientsLikeMe.
Posted by Lori Piscatelli Scanlon | September 1, 2009
We are excited to present the first member video for the PatientsLikeMe Mood community and what better way to kick it off than with one that represents the voice of the patient.
In June, we launched The Patient Voice with the inaugural report on inpatient therapy, a topic often discussed by our Mood community members. At the time of the report, 63% of patients on our site reported an efficacy of “moderate” or “major” for inpatient therapy.
Many patients have already benefited from the information in the report, so we decided to create a video that highlights our patient members’ tips and experiences. Check it out on our YouTube or Facebook page, but if you visit the latter don’t forget to become our fan!
If you want to know more about patients’ experiences with inpatient therapy, you can download the full report here. It includes even more tips and personal stories, interesting facts about the PatientsLikeMe community and a worksheet that will help you make the most out of your hospital stay. Of course, none of this would have been possible if patients like you were not willing to share. We are always eager to hear what you have to say, so please share on.
Once again, special thanks to our summer intern, Shane, for his work on the video!
Today is an exciting day for PatientsLikeMe. In a first-of-its-kind industry-patient partnership, PatientsLikeMe is joining forces with biopharma company, UCB, to launch a new community for people with epilepsy to capture real-world experiences of the disease and help advance research.
The news release announcing the partnership is below.
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BRUSSELS, BELGIUM and CAMBRIDGE, MA–(Marketwire - June 15, 2009) - Biopharma company UCB and PatientsLikeMe, the leading online community for people with life-changing conditions, today announced a strategic partnership to create an online, open epilepsy community that captures real-world experiences of people living with epilepsy in the U.S.
Scheduled to launch in early 2010, this platform will be designed to collect, analyze and reflect information received from people with epilepsy, regardless of their diagnosis, prognosis or treatment regimen.
This blog post is the second in a series from our attendance at the 19th International Symposium on ALS/MND in Birmingham UK in November 2008. When PatientsLikeMe attended the previous ALS/MND Symposium in Toronto Canada in December 2007, I was given a platform presentation to show the assembled clinicians, scientists and researchers what we had developed for patients with the condition. This year, as part of a session on the history of ALS/MND patients online, I was given the opportunity to show attendees some of the improvements we had made to the site since that time.
* Percentile curves for patients with PLS - When I said that we had more than 100 patients with PLS registered on the site, there was a collective gasp from the audience. Our large sample has allowed us to show PLS patients how they compare with other PLS patients for the first time. (Available to PLS members of the ALS/MND community)
* Geomapping - Patients on our system can see a map of the world and see registered users nearby using a Google Maps API developed by our resident geomapping whiz Steve Hammond. This allows patients in isolated areas, or even busy cities, to find other patients like them who they might want to meet up with or talk to on the phone. (Available to users in all our communities)
* Treatment database - By integrating the Multum Drug Database into our treatment system, users are presented with an accurate list of possible dosages for the treatments they are taking. We have also added an evaluation system that lets users share their opinions about a drug’s efficacy, adherence, burden, and side effect profile. (Available to users in all our communities)
* Lithium study tool - We have showcased our custom lithium study tool in a number of recent blog posts, but for many delegates this was the first time they had seen the evidence we’ve been collecting on lithium in ALS/MND.
* Future state modeling - Simply “tracking” a patient’s progression has never been the goal for us; we’ve always wanted to take past information and use it to predict the future state of an individual patient. In relatively linear diseases like ALS, that means we can help patients to plan in advance for when they might need a wheelchair or other equipment. It’s often the case that ALS/MND patients don’t get the equipment they need until several months after they could have benefited from having it. Such a tool would give a customized prediction for the individual patient. After all, most of us don’t want to know about the “average” patient, we want to know about a “patient like me”!
As we end 2008, more than 10,000 patients in our community are coming together to share their life experiences on PatientsLikeMe. How much experience is that? Try more than 32,000 YEARS of collective experience with MS.
More members than ever are sharing in-depth health information with each other, having repeatedly seen the value that this provides to others (and to themselves). Our forum is where members convene to find support and talk about all sorts of health-related topics, including MS-related treatments. Copaxone, Avonex, Tysabri, Baclofen, Rebif, Betaseron, LDN and 4-AP and others top the list of treatments discussed this year. In addition to our dedicated treatment evaluation reports, several members also use the forum to keep journals of their experiences with specific treatments to better help others understand these meds. There is also a good deal of discussion on dealing with other aspects of MS, such as depression, steroids, family and relationships, etc. To date, the forum has more than 17,000 posts.
Ready to share your experiences with us in 2009? Check us out to see what patients like you are doing to live their best life with MS. Happy New Year!
Thanks to all of you who contributed your “voice” to this video. It’s truly a reflection of patients helping patients live better every day. We look forward to hearing more voices in 2009!
According to a December 2007 iCrossing survey cited by Jane Sarasohn-Kahn in her Health Populi blog “34% of Americans turn to social media for health research.”
Jane points to PatientsLikeMe and others as “proof of the reality of social media in health is alive and well and healing”, and observes that “increasing numbers of people are reaching out to others for more than the kind of support they might have found in the Compuserve health interest groups in the 1980s; they’re finding practical solutions to chronic health challenges”
Interesting reading, especially her response to one commenter that “In the case of info for PatientsLikeMe, the database on drug dosing, quality of life and outcomes throughout the MS cycle is probably richer than any other single source on the globe”.
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
