16 posts in the category “One for All”

One for All: The Opportunity to Make Patients’ Lives Better

Posted June 3rd, 2011 by

“Patients are giving us their data, and we need to honor that by doing something that advances their disease, their cause, their power in the world.” – Jamie Heywood

This week marks the fourth and final installment of our latest video series, which explores what the recent changes at PatientsLikeMe mean for you as well as the entire medical establishment. (Missed the first three interviews? Catch up on what PatientsLikeMe executives Ben Heywood, David S. Williams III and Paul Wicks had to say.)

In today’s video, PatientsLikeMe Co-Founder and Chairman Jamie Heywood talks about the next steps in realizing the goal of PatientsLikeMe: to help all patients determine how they can affect their health outcomes and live the longest, most productive lives possible. What will it take to do that? Tune in to hear his vision of how healthcare could evolve as quickly as technology, provided that the concept of shared data is fully embraced.

To keep up with all PatientsLikeMe videos, subscribe to our YouTube channel today.


One for All: How Medical Research Is Changing Right Before Our Eyes

Posted May 27th, 2011 by

“I think what’s really exciting is the scale we’re operating under.  My PhD was conducted with 80 patients.  Last week, I got survey responses from 4,000 patients in a week.  That is unparalleled power in the research world.” – Paul Wicks, PhD

This week marks the third installment of our latest video series, which explores what the recent changes at PatientsLikeMe mean for you as well as the entire medical establishment.  (Missed the first two installments?  Catch up on what PatientsLikeMe executives Ben Heywood and David S. Williams III had to say.)

In today’s video, PatientsLikeMe R&D Director Paul Wicks shares his thoughts on how the increased scale of PatientsLikeMe will impact not only the types of patient tools we develop moving forward but also the way medical research is conducted.  Tune in to hear some highlights of how PatientsLikeMe research efforts are already helping patients and researchers better understand what causes certain diseases.

Stay tuned for the fourth and final installment of our video series next week.  To keep up with all PatientsLikeMe videos, subscribe to our YouTube channel today.


One for All: Walking the Road Ahead with Both Patients and Industry

Posted May 19th, 2011 by

“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.


It’s Fibromyalgia Awareness Day!

Posted May 12th, 2011 by

National Fibromyalgia and Chronic Pain Association

At the National Fibromyalgia & Chronic Pain Association, this year’s Fibromyalgia Awareness Day is themed CURE FM (Campaign for Understanding, Research & Education of Fibromyalgia), and many of our members are working to do just that.

Beginning as early as January, our fibromyalgia members have worked together to order t-shirts, send letters to TV shows and spread the word about fibromyalgia through their online social networks.

So what’s fibromyalgia really like? The best way to find out is from patients directly. Since we opened our doors to fibromyalgia patients in November 2008, we’ve had 13,826 fibromyalgia patients join our community and share their real-world experiences with this chronic pain disorder, which is characterized by pain or aching in the muscles as well as multiple points of tenderness.

Among other things, patients with fibromyalgia have reported that:

They also share practical tips for living with this debilitating condition in our forum every day. Some of the most popular topics in the fibromyalgia forum room include sleep issues, pain, research, coping and support.

Here are some recent forum comments about the disease’s effects:

  • “Sometimes I wonder who I am. It is like all the pain and problems define me. The pain controls my life.” –Fibromyalgia patient, age 50
  • “Being sick has permeated so much of my life that it comes up in almost every conversation I have.” –Fibromyalgia patient, age 33

To learn more about living with fibromyalgia, you can also explore individual patient profiles to see what people are saying about their symptoms, treatments and quality of life.  Get to know one of our fibromyalgia patients today.

PatientsLikeMe member emorgan


Join the Band: Raising Our Voices for Lupus Awareness

Posted May 10th, 2011 by
“I was diagnosed with lupus (SLE) at age 20 and had already lost about 60% of my kidney function. I had chemotherapy for nine months along with intense steroid therapy. I thankfully went into remission and have been since four months after my diagnosis. I still struggle with fatigue and kidney problems although I was transplanted in 2004. I will need another transplant most likely within the next year or two.”

Lupus patient, age 30

Lupus Foundation of America

May is Lupus Awareness Month, and today, May 10, is World Lupus Day.

Since PatientsLikeMe began welcoming all patients last month, we have quickly become home to more than 100 members with systemic lupus erythematosus (SLE), the most common form of this chronic autoimmune disorder that can affect any organ system in the body, including the heart, kidneys, lungs, joints and skin.

Here are some quick facts about SLE gleaned from our new members.

What is the gender breakdown?

What are the top treatments?

What are the major symptoms?

What can you do to increase awareness about lupus?   One very visible sign of support is wearing a wristband.  At the Lupus Foundation of America, the theme for this year’s awareness month is “Band Together for Lupus,” complete with accompanying purple wristbands.  You can also send an awareness e-card and download a flyer and logo for World Lupus Day, which you can then post on Facebook or other social media sites.

Finally, you can click here to sign the World Lupus Day pledge and watch a video featuring spokesperson Julian Lennon, the son of John Lennon.  He explains how the Beatles’ famous song “Lucy in the Sky” was written about his childhood friend Lucy, who passed away from lupus.

PatientsLikeMe member emorgan


One for All (Video): The Road Ahead at PatientsLikeMe

Posted May 9th, 2011 by

“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.


PatientsLikeMe Refutes Published Clinical Trial

Posted April 25th, 2011 by

screen-shot-2011-04-25-at-41612-pmCongratulations 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.

***

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

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

Boston Business Journal
PatientsLikeMe hits ALS study

FierceBiotech IT
PatientsLikeMe study challenges prior ALS claims

PatientsLikeMe member bheywood


One for All: The Road Ahead with PatientsLikeMeInMotion™

Posted March 23rd, 2011 by

PatientsLikeMeInMotion

This Spring, as you’re out at disease-related fundraiser events, take note of the people in those bright blue t-shirts walking, running or biking by your side. Those are patients like you!

Since its launch in 2009, more than 1,700 people (including patients, friends and family members) have taken part in the PatientsLikeMeInMotion™ program to raise money and awareness for various conditions. Here are some fun facts about PatientsLikeMeInMotion and a video of some of our members who have participated.

2009 Quick Facts

  • 2009 marked the debut of the PatientsLikeMeInMotion program.
  • Approximately 40 PatientsLikeMe members signed up teams to participate in PatientsLikeMeInMotion and led more than 700 people on PatientsLikeMe teams across the United States.
  • In its first year, the PatientsLikeMeInMotion program donated over $9,000 for charitable disease foundations such as the National MS Society (NMSS), Parkinson’s Alliance and the ALS Association (ALSA).
  • The largest member team in 2009 was formed for the annual Parkinson’s Unity Walk in New York. It’s here where we first met and interviewed some of our members (see our YouTube page to meet them).

2010 Quick Facts

  • A breakout year for the program, PatientsLikeMeInMotion doubled our number of sponsored teams from 38 in 2009 to 60 in 2010.
  • PatientsLikeMe members led teams of more than 1,000 people total wearing the recognizable, bright blue PatientsLikeMeInMotion t-shirts to events across 15 states.
  • Together, member-led teams raised more than $15,000 for their charitable disease foundations through PatientsLikeMeInMotion donations.
  • PatientsLikeMe teams were present at 20 NMSS events and 12 ALSA events, as well as fundraisers run by The National Alliance on Mental Illness (NAMI), The Epilepsy Foundation of America and the Parkinson’s Unity Walk.
  • PatientsLikeMe had the opportunity to sponsor Team Mid New England at the U.S. Transplant Games in Madison, WI (see highlights here.)
  • In 2010, we also launched our PatientsLikeMeInMotion Flickr page to host all of the photos our teams have submitted over the years. Check it out.

So, what will 2011 look like for PatientsLikeMeInMotion? That’s entirely up to you! Do you have an awareness event in your area you would like to be a part of? Sign your run/walk/bike team up for PatientsLikeMeInMotion and count on us to support you – both online and off!

PatientsLikeMe member lscanlon PatientsLikeMe member afleishman


One for All: Ways You Can Share, Find and Learn at PatientsLikeMe

Posted March 11th, 2011 by

When patients join our site, a common question we get is, “Now that I’ve signed up, what can I do here?” One answer is that you can chart the real-world course of your disease and compare it against other patients. But that sounds a little complex, doesn’t it?

If we break it down into simpler terms, we are really talking about you sharing your health outcomes with each other, finding other patients like you and learning from the information that you have all shared. That’s why “Share, Find and Learn” is part of our core message at PatientsLikeMe, as it best explains how you can help each other with the in’s and out’s of your condition.

Share, Find and Learn

To give you a better understanding of what we mean, we recently asked a few patients like you for examples of how you’ve used PatientsLikeMe to “Share, Find and Learn.”

PATIENT 1 (MS)

SHARE: “I’ve shared as much information [as possible] about the medications I’ve taken and still take and the CCSVI procedure that I recently went through. ”

FIND: “It’s helped tremendously when there are others that have undergone the same treatment or procedure in that we can share updates or milestones.”

LEARN: “We are all in the same boat. I’ve learned a lot about diets, vitamins and exercise, but most of all, I’ve learned to always keep the faith and never give up on hope.”

PATIENT 2 (MS, asthma)

SHARE:  “On the graph of the Multiple Sclerosis Rating Scale with time [which monitors the progression of MS], you have added reference percentiles to let folks know how they are doing relative to the rest of the population.”

FIND: “I just searched for females between 30 and 65 with three stars and could easily see who was doing better than average and who was doing worse than average.”

LEARN: “If someone is trying to decide about ‘medication versus no medication,’ they can fairly easily spend some time comparing how those who take medication are doing versus those who do not and make a decision for themselves.”

PATIENT 3 (fibromyalgia, Lyme disease, peripheral neuropathy, Babesiosis)

SHARE: “It is fascinating…how what one person learned about their condition, how to deal with it and what is normal, etc., can be communicated to everyone via this website.”

FIND: “I would like to do a search based on other members who also have chronic Lyme disease.” (Note: This is now possible, thanks to the recent upgrade. Use the search filters on the Patients page to find the nine members currently reporting Lyme disease.)

LEARN: “I actually have relieved one of my symptoms, in part due to PatientsLikeMe- and have found validation for this new treatment through PatientsLikeMe that I hadn’t seen otherwise. I’ve been a member since November, so that is amazing success in a short time.”

Thanks to all three members for sharing their thoughts and experiences. Why not see what you can “Share, Find and Learn” today?

PatientsLikeMe member kbrigham


One for All: A Building of Hope

Posted February 18th, 2011 by

As you know, we like to just check in with our members to see how you’re doing as a person, not just a patient.  Today, we have a very special interview with one of our earliest members with ALS, SmoothS.  We sat down with SmoothS to talk about his recent building of the first ever ALS rehabilitation center – the Leonard Florence Center for Living, (LFCL) – which opened in November of 2010.  Along with the interview, below is a video of the grand opening event. Have a good weekend!

* * *

2166 (Amy) Steve this rehab center rocks! Can you tell me what inspired you to start this project?
smooths (SmoothS) That easy; it is the horrible conditions in which a vented pALS is forced to live if you have no option to stay home. After my diagnosis, I was doing some research on my residential options when my care became more than my mother could handle alone. What I found was not pretty. There was nothing except for run-down nursing homes and chronic hospitals. I was discussing the problem with my friend Ron Miller and we tossed around the idea of a pALS residential co-op. I was at an ALS symposium in the spring of 2007 researching our idea when some people overhead my questions. They introduced me to Barry Berman who explained that he was considering building an ALS specialty residence with his proposed Leonard Florence Center for Living. It was important to me that an ALS Residence be fully automated and offer vent support. He agreed that it would and a beautiful relationship was born.The amazing thing is that we designed and built it in less than 3 years.
2166 (Amy) What was the toughest challenge in building this facility? What are you most proud of?
smooths (SmoothS)It has been one challenge after another but none of them proved exceptionally difficult to solve. Probably the biggest challenge was how to provide universal environmental control from a mobile wheelchair. I knew what I wanted to have but found that it didn’t exist. I found a programmer of home automation software and contracted him to build a comprehensive package based on my design. The system is now called PEAC (www.PEACpc.com) and is already being marketed to other health care facilities and we plan to also make a consumer product. I hope and expect that it will revolutionize the independence for the physically disabled.
2166 (Amy) At the grand opening you said that this was the first of hopefully many rehab centers that you want to be involved with, do you know where the next one is going to be?
smooths (SmoothS) We are having conversations with several cities such as Atlanta and Chicago. I am exploring several options to the model here but insist that any variations still be fully automated and provide vent support to anyone that needs it. I am actively marketing the project to several States and welcome any leads.
2166 (Amy) You are a dedicated member of the ALS community online with PatientsLikeMe and offline with the rehab center, What has that meant to you, to be involved in the lives of fo many people on and offline?
smooths (SmoothS) My work on the ALS Residence has been the most satisfying of my life. Obviously, because I will benefit from the project in a very personal way but I also get to help others at the same time. This would be the perfect job for me even without ALS. I get to utilize my life skills to continue being a productive and involved member of society. That is a lot more than many healthy people can say. I know that the ALS Residence Initiative keeps me focused on what I can do. Similarly, PatientsLikeMe is forum where everyone is equal. There is no disability in cyberspace. My connections to others is what keeps me going so ALSRI and PLM help me much more than I could help other people. I am happy that others may find help or inspiration in my efforts. Life is good.
2166 (Amy) Thanks so much for sharing, SmoothS!


One for All: A Cross View of Patient Sharing

Posted February 4th, 2011 by

With more than 82,000 patients on PatientsLikeMe, there’s a lot of information being shared with one another.  Last month, we highlighted how your sharing affects the experience of many on our site (One For All series).

commgraphicToday, we continue that theme by taking a look at information being shared across all of our communities that many of you may have in common. Can you guess how many of you are on similar treatments or experiencing similar symptoms even though you are in different communities? Read on to find out.

DID YOU KNOW…

  • Of the members who have reported their age, more than 8,000 of our of you have indicated you’re under 30-years old and more than 12,000 are 55-years old or older.
  • Approximately 31% (or 27,013) of patient members across all communities experience depression.

How are you treating your condition?

What are your major symptoms?

What are you talking about?

  • Some of most frequently “tagged” topics in the forum include research, symptoms (e.g., pain), SSDI (Social Security Disability Insurance), coping strategies and side effects.

A special thank you to all of our members for continuing to share your data and experiences to help others just like you.


The Patient Rules. A Discussion with the PatientsLikeMe Executives

Posted December 13th, 2010 by

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:

  1. “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.
  2. “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 screen-shot-2010-12-13-at-125537-pm
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).


One for All: Interview with Babsie (Fibromyalgia Community Welcomer)

Posted December 10th, 2010 by

To close out this week’s blog series (“One for All”), we bring you an interview with another noted “welcomer” from our Fibromyalgia community.  Meet Babsie.  A member of the 19,000-member community, she has commented on hundreds of patient profiles to date (which is highlighted in a graphic on Jeff Cole’s earlier blog here).   Read on to hear what Babsie has to say about why she joined the Fibromyalgia welcome wagon and what keeps her going.

liz1 (Liz) Yesterday, we heard from MS community member, Diamondlil58, about her experiences welcoming members.  Why did you start welcoming people to the Fibromyalgia community?
dscn0251-full
(Babsie) Someone welcomed me, and it made me feel good.  I never saw them on the forum, so after a few months I was curious and seeing the new patients without any subscribers or comments I would subscribe and make a comment.
liz1 (Liz) What type of responses do you get from people you welcome? 
dscn0251-full (Babsie) Always favorable and kind.  Some prayed for me and others became friends outside of PatientsLikeMe.
liz1 (Liz) Do you keep in touch with people you welcome?
dscn0251-full (Babsie) Yes, in the forum; it is easier so I encourage people to post there. I monitor the Patients Tab and if they update I respond. I can also look at my own subscribers anytime I wish to send them a Private Message. 
liz1 (Liz) What is one thing you’ve learned from looking at new member’s profiles?
dscn0251-full (Babsie) Invisible disease is no respector of persons, young and old, their economic status – does not matter.
liz1 (Liz) Do you feel more engaged with the site and its members as a result of the Welcome Wagon?
dscn0251-full (Babsie) Yes, if I am feeling isolated I go and invite others to participate.
liz1 (Liz) Thanks for all the connections you’ve made just by inviting others to participate, Babsie!

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.