10 posts tagged “facebook”

Patients as Partners: Cyrena on connecting through social media

Posted June 29th, 2016 by

Earlier this month, Team of Advisors member Cyrena shared how she relies on many of the Partnership Principles in her interactions with her physicians. Today, she offers some insight into a different type of relationship in our health journeys — the ones we have on social media.

In addition to PatientsLikeMe, Cyrena is active on Twitter and Facebook and has used both to connect with other patients who what it’s like to live with bipolar II and lupus. Whether you’re social media-savvy or not, check out how she stays in touch with her virtual community to “exchange advice or just plain empathy” and get involved in patient advocacy.

 

“It’s all about networking”

Many patients live with multiple conditions, but the current nature of illness and treatment forces us to think of our conditions individually. In reality, these conditions interact and influence each other in ways that clinicians may not understand or recognize. Many of these patients end up online and looking for support.

I primarily interact with the chronic illness community on Twitter, but to a lesser extent on Facebook as well. I was an intermittent follower, but I became highly active during my hospitalization for my spinal cord injury in 2014. I didn’t really know any other chronically ill people with either of my conditions, but when I dove into Twitter, I found people with each, both, and so many more. It was exciting to find this virtual community that provided the peer emotional support that I lacked in real life.

The number one form of support that I obtain from interacting with patients online is validation. In physician appointments it is challenging to fit everything that I would like to convey or discuss in 15 to 30 minutes. But when I go online, someone is going through the same thing I am and we can exchange advice or just plain empathy. There is also an extensive patient advocacy community which I have become part of, which gives me the opportunity to not just voice my opinions on how patients are treated in the modern medical system, but also brainstorm with others on how to affect change.

“It was exciting to find this virtual community that provided the peer emotional support that I lacked in real life.”

 

First and foremost, I would recommend that patients interested in partnering with communities in social media recognize that there may be a sizable upfront investment. Twitter is akin to hovering above a massive highway and trying to identify which drivers you want to talk to. You can start by finding the Twitter name of one of the major organizations for your illness(es). Who do they follow? Follow some of those people. Who do they talk to? Follow those people. Start engaging people by sending messages pertaining to a topic of active discussion. Eventually those people start to follow you and your network grows.

Twitter moves very fast, but there are ways to stay engaged and live a normal life. I have a Twitter app on my phone that I check when I’m waiting in line or at the bus stop, and I keep a Twitter tab open in my browser when I’m working so I can pop in and out whenever I need a break from working. I have found the investment to be worth it because I like the rapid turnover of conversation and the opportunity to have a pseudonymous account. Others may prefer using Facebook for forming social media connections. There are thousands of patient groups there. Again, just start by searching for your illness and move from there.

It can seem scary and time consuming, but I’m an introvert and a graduate student. I just needed to find other people out there like me in some way. To quote a phrase I’ve heard endlessly over the past few months, “It’s all about networking!”

 

Share this post on Twitter and help spread the word.


Celebrate the Role of Social Media Today

Posted June 30th, 2011 by

Mashable, the pioneering digital and social media news site, has pronounced today Social Media Day. Why? “Social media has changed our lives,” they wrote in 2010, prior to launching the event. “It has not only changed the way we communicate, but the way we connect with one another, consume our news, conduct our work, organize our lives, and much more. So why not celebrate?”

Social Media Day 2011, sponsored by Mashable

Mashable is encouraging everyone who uses social media to take part in the second annual celebration. Some examples including organizing a Social Media Day get together on Meetup, posting photos from your get together on Facebook and using the hashtag “#smday” on Twitter. We would add updating your PatientsLikeMe profile and reaching out to another patient like you to this list of possible celebratory activities.

That’s because, at PatientsLikeMe, we’ve seen how social media has transformed the lives of patients. Before, there was only the information and advice provided by your doctors. Now, you have access to a wealth of real-world experiences and data from patients around the globe. As a result, you can ask smarter questions, make better decisions and take greater control of your own care.

Social media has also helped to accelerate medical research. A stellar example is ALS Untangled, a research consortium that uses social media (including Twitter, PatientsLikeMe, NING and open-access journal articles) to investigate alternative and off-label ALS treatments. There’s also the unprecedented ability to survey and learn from thousands of patients, as R&D Director Paul Wicks discusses in this recent video.

So if social media can help both patients and researchers, it’s worth celebrating, no? Share your thoughts on how social media has impacted your life in the comments section below. (And, yes, that would count as another social media activity!)


PatientsLikeMe “Express Yourself” Video Contest: Cast Your Vote!

Posted May 23rd, 2011 by

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The submissions are in and it’s now time for you to decide the winners of the first-ever PatientsLikeMe Video Contest! We asked “How has PatientsLikeMe changed your life?” and our members have worked long and hard to prepare their answers in these memorable videos.  Take a look and vote for your favorite!

PATIENTSLIKEME VIDEO CONTESTVOTE HERE

There are 5 winners chosen for this contest and your votes decide 3 of them!  The creators of the top 3 voted videos will win American Express gift cards ranging from $150 – $500 (see contest rules for more details).  The deadline for voting is June 3, 2011. Anyone and everyone can vote, so be sure share to tell your friends and family.  Use “Share This” button on the video contest page to post on Facebook, Twitter (#PLMExpressYourself), etc.

Happy voting everyone!


Tell The World: A PatientsLikeMe Year in Review (Part V – Marketing)

Posted January 7th, 2011 by

epilepsytearsheet08With 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.

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!

PatientsLikeMe member lscanlon


One for All: Interview with Diamondlil58 (Welcomer of 15k Patients)

Posted December 9th, 2010 by

We’ve been learning about how connected our patients are this week in our blog series called “One for All.”  In the first two blogs by Jeff Cole, we read (and saw through cool graphics) how some of our members are initiating an unparalleled universe of dialogue.  Today, we sit down with one of those members, Diamondlil58.   A true “diamond” in the MS community, she has left more than 16,000 comments to  welcome other members and get conversation started. Here’s our interview with one of the founders of our PatientsLikeMe “Welcome Wagon,” Diamondlil58.

liz1 (Liz) How and why did you start welcoming people? 
diamondlil38 (Diamondlil58) I was welcomed to PatentsLikeMe by two lovely ladies – JHCamero and Greeneyes.  Their messages made me feel welcome.

I wanted to give back to the MS Community.  I didn’t feel that I knew enough about the disease and the effects it had on others to offer advise in the forum.  But, greeting people is something that I felt comfortable doing.

liz1 (Liz) What type of responses do you get from people you welcome?
diamondlil38 (Diamondlil58) I have received many nice replies from new patients.  Some tell me their experiences,  others ask questions or request help setting up their profile page.  Some want to know my view on therapies and treatments.  I continue to welcome because it has been rewarding to me.  I understand first hand how scary the MS diagnosis can be; how friends and family can’t possibly understand what it’s like to feel the way we do; how we can be perceived as lazy; or the fear of parking in a handicap parking spot and hoping no one verbally attacks us.  Welcoming give others an opportunity to view a profile and helps them see what they can do with theirs.
liz1 (Liz) Do you keep in touch with people you welcome?
diamondlil38 (Diamondlil58) I do keep in touch with so many people that I have welcomed through this site.  Some through Facebook, others in email.  I’ve even met several in the past year or so.  I have built some wonderful friendships here and make more everyday.
liz1 (Liz) What is one thing you’ve learned from looking at new member’s profiles? 
diamondlil38 (Diamondlil58) That we have all different backgrounds.  That we are not all the same but we all share one thing in common and that gives us something to build on to support each other.
liz1 (Liz) Do you feel more engaged with the site and its members as a result of the Welcome Wagon?
diamondlil38 (Diamondlil58) Absolutely!  I wouldn’t do it if it was negative or wasn’t rewarding.  It’s my way of giving back to the MS Community.  I have a great appreciation for the founders of this site, the staff, and the caregivers that join us.  This site has been therapeutic for me in more ways than one, and I am so grateful that I came across it three years ago surfing the internet looking for information on my symptoms.
liz1 (Liz) We’re glad you did too.  Thanks so much for keeping the wagon rolling, Diamondlil58.  You’re an inspiration.

Who’s #2 in Healthcare Innovation?
You guessed it – PatientsLikeMe

Posted February 18th, 2010 by

It’s been an exciting few months for PatientsLikeMe.  Here’s a quick recap…

Today, Fast Company released its mic_logoannual  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.

PatientsLikeMe member lscanlon


A Year in Review: PatientsLikeMe in 2009

Posted December 31st, 2009 by

As 2009 comes to an end, we want to take this opportunity to thank all of our members, partners and general fans for another great year.   Here’s a recap of some of the exciting happenings at PatientsLikeMe these past 12 months.  Wishing you all a Happy New Year!

Community Milestones
This year, the 15+ disease communities at PatientsLikeMe became an online home to more than 50,000 members.   The fibromyalgia community was expanded this past fall to include patients with chronic fatigue syndrome, and we announced a new community scheduled to launch early next year for people with epilepsy.  In addition to celebrating our communities’ awareness days and months within the site and right here on the blog (including Fibromyalgia Awareness Day, MS and PD Awareness Months, National HIV Testing Day and World AIDS Day), many of img_8741-300x225our members also participated on PatientsLikeMe teams in walk/run efforts to raise awareness and money in the name of their disease.  Congrats to the 40+ teams walking at events to support non-profit organizations like ALS Association, National MS Society, NAMI, Parkinson’s Alliance, APDA, and the MS Society of Canada. The real-time sharing and learning happening on PatientsLikeMe was also highlighted in the report series called The Patient Voice (starting with inpatient therapy for people with Mood conditions).  Check out highlights from all these programs on these videos from the Fibromyalgia, Parkinson’s, Multiple Sclerosis and Mood communities.

Many of our members have also become fans of PatientsLikeMe on Facebook.  Here are a few quotes posted to our Facebook page in ’09:

I find this site so beneficial in looking for the tools to cope with the disease. People post research and real-life patient experiences of current trials and treatments. Hope is a major focus of PLM and I encourage others to join. We are strong in numbers and we have a voice.”

“PLM is a wonderful way to express what and how to live with this disease. It has changed my life for the better, have met wonderful individuals and we have shared, cried and grown by reaching out and expressing from our hearts, have made wonderful friends and have learned so much.”

Research Updates
If you haven’t checked out our research page or subscribed to Google Scholar alerts (92 articles referred to us in 2009!), here’s what you’ve been missing…

This year our ever-growing research team continued their analysis of the real-world data being shared by patients like you.  Awarded the inaugural JMIR award at Medicine 2.0, the PatientsLikeMe research team published pieces on compulsive gambling in patients with Parkinson’s disease in Movement Disorders, expanding the gold standard rating scale in advanced ALS in European Journal of Neurology, and “The power of social networking in medicine” in the highly respected journal Nature Biotechnology.

Throughout the year, the team has also shared insights via videos (like this series on the history of ALS or a recap of a study on the antidepressant Amitriptyline) and various presentations (such as an overview of our work at the at Eurordis berlin-lithium-poster-207x3001AGM in Athens and updates on our lithium study at the International ALS/MND Symposium).  In addition to working on the development of our new communities, the team took additional steps to incorporate genetics into the PatientsLikeMe platform.  By participating in new partner studies (such as 23andMe and NEALS) and utilizing new product upgrades, including the launch of the Genetic Search Engine, patients are learning more about their condition and coming closer to answering the question:  “Given my status, what is the best outcome I can expect to achieve, and how do I get there?”

Keep your eyes out for more to come in 2010 as our R&D team rolls out more insights and outcomes measurements (like the Quality of Life scale in HIV), more improvements to the PatientsLikeMe platform, and cutting edge research in the peer-reviewed scientific literature.

The Business Side
As Ben said in a recent blog post, “we can’t have a business without you [the patient] and our communities can’t exist to help patients without a business.”  Throughout the year, the PatientsLikeMe executive team traveled around the world to present to industry partners, researchers, healthcare professionals and government leaders about the power of real-world patient data-sharing.  Here are some highlights from ’09:

  • The National SummitInnovation: As a leader in Health 2.0, PatientsLikeMe executives are often asked to speak at various industry events.  Check out photos of Ben speaking at The National Summit and stay tuned for videos from Jamie’s presentation at TEDMED and David’s presentation at Bil:Pil.  You can also tune in to our live event tweets on the PatientsLikeMe Twitter account in 2010.
  • Media Highlights: PatientLikeMe members, data and executives were also featured in media mentions throughout 2009, including WIRED, Forbes, U.S. News & World Report, Fox Business Live, Newsweek, New York Times, as well as Seed magazine, Nature Biotechnology and Neurology Today.

Happy New Year!
– The PatientsLikeMe Team


Harnessing “New Media” for Patient Advocacy

Posted September 18th, 2009 by

The media is abuzz at the moment with stories about social networks like Facebook and Twitter, carrying pieces on the good (Facebook Fan Page raises $10,000 for a Silicon Valley Food Bank), the bad (Facebook users are leaving out of mistrust and boredom), and the controversial (Social networking site for living organ donors). In the health domain, there is a fascinating ongoing debate about the interaction of pharmaceutical companies with the internet (John Mack’s Pharma Marketing Blog is the main hub of discussion), as well as the ways in which non-profits should be using innovative new tools. That was the focus of a workshop recently convened by the New England chapter of the Arthritis Foundation at the Equinox Hotel in Manchester, Vermont.

R&D Director Paul Wicks with Vermont Governor Jim Douglas

(l-r) PatientsLikeMe R&D Director Paul Wicks with Sue Nesci, Chief Public Health & Policy Officer of NE Arthritis Foundation and Vermont Governor Jim Douglas (keynote speaker)

PatientsLikeMe was invited to share our experiences of using the internet to empower patients, change perceptions in the medical field, and effect real change through shared information.  Here are some of the topics discussed:

  • This is not a new way to use old techniques
    Social media is a two-way street, and you have to engage with your audience with openness and transparency. The vast majority of people support your activities, but there will always be some people with tough questions on the most efficient use of funds, priorities for campaigning, or the direction your organization is going in. By participating in social media, you are signing an unwritten contract to interact with your audience – it’s the right thing to do but it takes planning and resources to do it well.
  • “Free” doesn’t mean it won’t cost anything
    Although many new media sites don’t typically charge a fee, you should keep in mind that there are overheads for non-profits in terms of staff time, training, consultancy advice, software, and equipment.
  • What problem are you solving?
    There’s no point in setting up a Facebook fan page or a Twitter account without a clear idea of what you’re trying to accomplish; i.e., Increased membership amongst patients? Increased awareness of your disease in the general public? Fundraising?  It’s also important to survey the online landscape and decide whether you will be adding something new or replicating an existing resource that’s already out there. If there is already a patient-run support group online, do you really need to set up your own “official” version?
  • We are looking forward to continuing the discussion to help patients benefit from new ways of doing things, while drawing upon the vast experience of those in the non-profit world who have been fighting for patients for many years.

    PatientsLikeMe member pwicks


    PatientsLikeMe Facebook Page

    Posted June 25th, 2008 by

    facebook-logo.gifAre you on Facebook? We are! Simply search for “PatientsLikeMe” to find our new company page. Once there, click “Become A Fan,” and a “My Pages” link will be added to your profile. Remember, Facebook is an open platform that anyone can view and isn’t part of PatientsLikeMe. Therefore, any information you share about you is open to the 100 million Facebook members. Thanks for spreading the word about us to your Facebook friends.

    Currently, our Facebook page features photos from the AIDS Walk Boston, which drew over 20,000 participants and raised $1.2 million. We were proud to be a sponsor of the Wellness Festival that accompanied the successful June 1st event. Where can you see us next? We’re a sponsor of the National Parkinson’s Foundation’s 6th Annual Young-Onset Parkinson’s Network Conference, August 7th-9th in Atlanta, Georgia. Staffers Paul Wicks, a speaker at the conference, and Maureen Oakes will be present.

    PatientsLikeMe member amorton


    Wikinomics Blog Praises PatientsLikeMe Business Model

    Posted April 30th, 2008 by

    wikinomicsYesterday Naumi Haque of the Wikinomics Blog referenced PatientsLikeMe as part of a bold prophecy regarding viable business models for social networking companies, particularly Facebook.

    First, we are honored that Wikinomics found our business model compelling given our decision to forgo an advertising-based revenue stream at this time. While Facebook is a pure-play social network (and defines the space), we are a personalized medicine platform with social networking components. The differences between our companies explain the differences in business approaches.

    How? Social status on Facebook (and other social networks) relies on the number of friends one amasses as well as the diversity of activities in which one participates. Status on PatientsLikeMe, however, is conferred to each patient by how much data one shares with the rest of the community. We employ a MS iconstar-based incentive program for patients to keep their data up to date. A three-star patient shares a diagnosis date, is current with outcome, treatment and symptom information, and has provided a certain amount of Mood iconhistorical data. This deep data sharing provides credibility to the patient for all activities on the site (forum posts, private messages, treatment and symptom experience, etc.). Every interaction is dynamically linked back to a patient’s profile through our “patient icon” (see right) that graphically describes the patient’s current status with the disease. In essence, sharing data gives patients our version of “street cred”.

    Since data drives the activity on our site, so must it drive our business endeavors. We are decidedly not an eyeballs play and will likely never reach the stratospheric numbers Facebook boasts in total members. So advertising isn’t as compelling an option as a revenue stream. Our goal, however, is to create new knowledge from the shared experiences of our patients. We won’t need 50 million people to participate to achieve that goal. We sell this deep information (anonymized) to companies that are most aligned with the needs of our patients (life sciences companies for treatments and health plans for health management).

    It is true, though, that the more members we have, the more insight we’ll be able to derive about the course of disease—and maybe figure out novel ways to change that course. Patients already have many of the answers. We invite people interested in changing the course of their disease to join PatientsLikeMe.

    PatientsLikeMe member dwilliams