18 posts from December, 2010

Overcoming Obstacles – Newsletter Highlight 2010

Posted December 27th, 2010 by

Last week, we posted highlights from our December community newsletter interviews. As we close out 2010, we want to spotlight another question asked this month – one that is relative to all members, all patients (no matter the condition).  What obstacles have you faced and overcome this year?

To review all of our newsletters, you can visit our archives page here.

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2166 (Amy) What obstacles have you overcome this year?
ellie
(ellieGADsufferer – Mood Conditions Community)

First of all, I became well enough to leave my local psychiatric hospital after having been an inpatient for six months. My anxiety means that all new things – even getting on a bus to go somewhere new – make me have severe panic symptoms.

I now make sure I am out of bed by 0700hrs during the week and make myself go out at least three times per week, whether it is meeting friends for coffee or attending appointments. Otherwise I will return to “avoidance,” whereby I cut off all contact with friends and family, including calls and text messages.

kidneygirl (kidneygirl1198and0505 – Transplants Community)

I have had to deal with and overcome the struggles that come with tardive dyskinesia. Reglan has been black-boxed [with a FDA-mandated warning about the risk of tardive dyskinesia] over the past two years, but I took it for three or four years before that. [Read kidneygirl1198and0505’s Reglan treatment evaluation for more details.]

Signs of tardive dyskinesia may include: continuous and repetitive movements of the mouth, tongue, and jaw; facial grimacing; lip smacking, puffing of the cheeks; uncontrollable movements of the arms, legs, fingers, and toes; and swaying motions of the trunk or hips.

Mine has gotten so bad that I have regular grand mal seizures from time to time, and sometimes it’s hard to carry on a conversation without looking weird.

mtnlady (mountain lady – Parkinson’s Disease Community)

One of the biggest obstacles in my life this year was getting over the death of a very close friend.  This person became ill and died within a few months.  Her death made me more aware of how precious life is.

Another obstacle was in the adjustment of my medicine for Parkinson’s.  My doctor wanted me to try a new medicine with fewer long-term side effects.  I tried it for several months but did not do very well.  I am currently back on my original medicine, taking a little more than before, but I have readjusted well.

andrew (andrewn78 – HIV Community)

This year I overcame a hard breakup. It was difficult because I thought we were going to be together for a longer term relationship than we were (only nine months).

It was also difficult to start dating again. I forgot how many people don’t know much about how HIV is contracted and that there are many people who would never date someone who is living with HIV or will date someone living with HIV but the fear of contracting HIV puts too much of a damper on the relationship. It’s a difficult process.

tommymkr (Tommy Maker – ALS Community)

I’ve spent a lot of time this year getting used to the fact that I have become dependent on others.

Prior to diagnosis, I sat on the local council, was involved in the organization of all types of public elections and I was a trade union official. These were voluntary roles which involved helping others. Yet, initially, after diagnosis, I had an enormous difficulty accepting help from others. However, I’ve come to realize that I have a loving family, fantastic friends and very supportive colleagues. I have found that many of them don’t know what to do and are very glad when I am specific as to what they can do for me.

I’ve also learned that no question is too personal. I struggled a lot with questions about personal hygiene and when I found the courage to ask these most intimate questions, I found that the professionals were so familiar with the questions asked that, beyond the initial embarrassment, we quickly went on to find solutions. I have also found that when people ask questions about my condition, they are entitled to an answer, an honest answer.

nates (Nates-Sweetpea – Fibromyalgia/CFS Community)

Oh my, 2010 has been a huge year! I didn’t know how I was going to get through it whole, but here I am knocking on 2011, one step at a time. I had to rejoin the workforce on a part-time basis this year, after years of not working (not being able to work), but I had to as my husband had lost his job about 18 months previously, and we were facing bankruptcy!

So I’ve been working part-time since last February, about 17 to 32 hours a week. We did go through bankruptcy, lost our home, vehicles and our high 700’s credit score with it. But you know what, I survived.  Actually, no, I overcame, with the help of a very supportive Sunday School class, great friends, and a wonderful husband and daughter.

kg
(kg10043 – Epilepsy Community)

I work for the US Forest Service and, as of July, made it to retirement age still working. Two times they tried to force me to take a disability retirement. To keep working I have had to move around to several jobs in four different states because of my health. Not only have I made it to retirement age, but I am still working even though they are trying to get rid of me once again. (What a joke when you consider that the federal government has a quota for disabled employees).

It has meant I have not only had to work in a variety of locations, but doing different kinds of work. Just in the time on this forest I have worked as the Oracle DBA in the computer shop, in GIS, later in Forest Planning, with a crew of five Soil Scientists, a Botanist and myself mapping the soils and ecological types and writing recommendations for management.  And now for the last two years I have been “unfunded” and doing all kinds of random jobs for projects in the office. Just this year that has included supporting the USFS in legal challenges as well as jobs so simple as filing paperwork and addressing envelopes.

cobe (cobebu8 – MS Community)

For me, with multiple sclerosis and ADHD, my main problems have been the concentration to do what I need and want to do and fighting the progression of MS. I have RRMS [relapsing remitting MS] but since I have had it for 25 years, ever so slowly, it is progressing at the same time I get exacerbations. I have a new neurologist too, and he is part of a big group and getting through when I am having problems, is a problem.

Plus, with only SSDI [social security disability insurance] and not being able to find a part-time job, I have had to stop taking some needed meds and not going to necessary doctor’s appointments (e.g. my eye surgeon/doctor to see if the optic nerve is still swollen and I can’t do a necessary MRI because the insurance company won’t pay.) So to get help for my asthma, I am doing a research study to get free care. I haven’t found one for MS or depression yet.


PatientsLikeMe member lscanlon


Happy Holidays from PatientsLikeMe

Posted December 23rd, 2010 by

PatientsLikeMe wants to wish all of our community members, Facebook fans, Twitter followers, blog readers and general company enthusiasts a very happy holiday season. Here’s a video from our leadership team to put a smile on your face.

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Click on image to play


Sharing and Learning with PatientsLikeMe

Posted December 22nd, 2010 by

In December community newsletters (launched earlier this week), we asked some of our members to think about what they’ve shared and compared in 2010.  Below are highlighted answers from each interviewee across all nine community newsletters.  Thank you for your contributions.

We also want to thank all of you who have contributed to the 90 newsletters we ran this year, including the newly launched ones in our Epilepsy and Transplants communities.  Finally, a special thanks goes out to our newsletter writer, Amy Morton, for pulling these together every month.

To review all of our newsletters, you can visit our archives page here.

* * *

2166 (Amy)

How has PatientsLikeMe helped you learn and share this year?

tommymkr (Tommy Maker – ALS Community)

PatientsLikeMe has provided me with new friends-people who are experiencing the same problems as I am. I’ve learned that there isn’t a single question that won’t get a vast myriad of answers from the community. I’ve learned that we’re all very different people, and I’ve learned we don’t always agree.  I’ve learned that we all care enormously for each other and are very eager to help those who find themselves in the same boat as we are. But most of all I’ve learned that I am not on my own.  I’m not the only one facing a bleak future and not the only one who is able to appreciate what he has at the moment.

cobe (cobebu8 – MS Community)

I really like it here in that I can keep track of all my meds with their side effects, etc.  Plus I like it that I can list symptoms and have a history of all of it to review and learn from and share with my doctors. I hope that my input on meds, therapies, etc., helps other people. It is good not to be alone.


mtnlady (mountain lady – Parkinson’s Disease Community)

It has given me the experience of reading about others who are in situations similar to mine.  It has shown me that I am not alone.  I love reading the newsletters and the comments from other readers. It also helps to keep me up-to-date on any new suggestions or treatments.

Also, I became acquainted with someone online through PatientsLikeMe.  We actually live in the same town, both work in the field of Education and have had Parkinson’s for the same length of time.  Getting together with her was a pleasure, and she introduced me to the idea of meeting with a support group, which I had never done before.

ellie
(ellieGADsufferer – Mood Conditions Community)

It is invaluable. I find the Symptoms and Treatments areas so helpful. I have learned (from genuine people who are taking these meds) that some of my “quirky” side effects and sufferings from the meds I take can and do happen to others and are not imaginary.  (My general practitioner and Consultant just brush the list aside and shrug their shoulders).

I have learned that I am not alone with my illnesses, which is good to know, and I have also learned that there is “light at the end of the tunnel.”  I try to keep my profile as up to date as possible in the hope that it will be helpful to at least one or two members. I rate my Daily Mood [now called InstantMe] at least five days per week and always complete my Mood Map, again for the same reasons.

Well done PatientsLikeMe and its members. Keep going, you are doing really good work and long may it continue.

andrew (andrewn78 – HIV Community)

I love organization and having PatientsLikeMe help me to organize all of my medical information. I would like to have an ability to log simple notes on the PatientsLikeMe profile so every time I go to my doctor I can make some general notes (if needed) for that visit on my experience and what was covered with my provider.

(Note that all users can now use InstantMe to add notes/annotations to your Doctor Visit Sheet)

nates (Nates-Sweetpea – Fibromyalgia/CFS Community)

PatientsLikeMe has been such an encouragement to me, not only in what others have given to me through sharing their stories, but also by opening up a window for me to be an encourager also. I love the newsletters that are super reminders of how to not get off track, and also how to be good to myself.

kg
(kg10043 – Epilepsy Community)

I think I have been pretty good at sharing, but this has been one new method, especially with some of the health issues with others facing similar situations. In the past I have answered questions for people who had their first seizure or just questions, but with this site, I am able to communicate with others who have had the same operations, take the same medications, etc., and really understand things better (from a different perspective).

kidneygirl (kidneygirl1198and0505 – Transplants Community)

PatientsLikeMe has helped me so incredibly much!  I’ve made so many friends that I thank God for every day.  It’s just like, no matter what you have or haven’t had transplanted, whichever organ you need or have, everyone on here understands you and what you’re going through.

I just really hope that people can say that about me.  It took me awhile, but no one is alone out there.  Everyone is going through their own personal struggles.  I just want everyone to know I am all ears!

PatientsLikeMe member lscanlon


PatientsLikeMe at the American Epilepsy Society Meeting 2010

Posted December 20th, 2010 by

AES 2010 boothEarlier this month, PatientsLikeMe was fortunate enough to attend the 64th Annual Meeting of the American Epilepsy Society in San Antonio, Texas. We were there to spread the word about PatientsLikeMe to some 4,000 attendees including epileptologists (physicians specializing in the treatment of epilepsy), neurologists, nurses, and researchers. We had a great spot on the booth of our partner UCB, which featured a large display for us to show the site to conference delegates and answer any questions they might have. Some of the typical questions we got were:

  • “Is this free for patients to use?”   Answer: yes!
  • “How do patients record their seizures?”  Answer: they can very quickly and easily enter both the frequency and severity of each kind of seizure they had during the week
  • “Can I send you some patients?”  Answer: definitely!
  • “What kind of research can you do with the site?”  Answer: stay tuned…

We were also there to present a poster comparing our data to another large data set, the Pharmetrics insurance claims database. Now, we know reading about statistics isn’t the most thrilling of subjects, but the idea was to answer another important question we hear all the time: “How biased is your community?” Biases are important because they affect the quality of the research you can do and the conclusions you can draw from your findings. In our case, an early comparison of our data against a claims database suggests that our community members are more likely than the wider epilepsy population to be:  i) female, ii) in their 30s-40s (more people tend to experience their first seizure either in infancy or old age), and iii) on multiple medications to treat their seizures (“polytherapy”). We want to be transparent about understanding our biases and sharing them with the world, so you can click on the poster below to see the exact findings we presented.

aes2010-poster-thumbnail1

The conference was also a great opportunity to meet other leaders in the online epilepsy space, such as our friends at CURE Epilepsy.org, Epilepsy.com, Seizuretracker.com, and to meet with researchers from an exciting online project called the “Managing Epilepsy Well Network.” In many ways epilepsy is leading the way in online resources and we hope next year we might even convene a special meeting for us all to share ideas on the best ways to help this important patient community.

Our last opportunity to spread the word about epilepsy fell upon our Chairman and Co-Founder Jamie Heywood.  He spoke to some of today’s leading epilepsy doctors in the world about how we can help patients answer the question: “Given my status, what is the best outcome I can hope to achieve, and how do I get there?”

PatientsLikeMe member pwicks PatientsLikeMe member AMGraham


Patient Interview: “A Sense of Togetherness, Love and Unity”

Posted December 17th, 2010 by

This week’s “Treat Us Right” theme focused a lot on the sentiments and data you share every day to help others learn more about your real-world experiences.  We, at PatientsLikeMe, also like to just check in to see how you’re doing as a person, not just a patient.  Here’s an interview with member “jesus reigns,” a member of our PatientsLikeMe Fibromyalgia Community who was interviewed for last month’s newsletter.   Read on to learn more about what puts a smile on her, her attitude on life, her favorite holiday traditions and more. Enjoy!

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2166 (Amy) What puts a smile on your face?
mama-full (jesus reigns) My children, my church family and the holidays.  Christmas is my favorite holiday, so I get to enjoy all of those things at the same time.  I am very sentimental, so it doesn’t take much for me to get emotional.
2166 (Amy) How would you describe your attitude on life?
mama-full (jesus reigns)
My attitude on life has changed quite a bit since I became ill with fibromyalgia.  I used to think that everything had to be done each day, just so.  I was a master in multi-tasking and could get by on six hours of sleep a night.  I would take on more and more tasks outside of the home, church assignments, school activities and so on.  My day was always full of things to do, and not enough time in which to do them.  I used to feel guilty when I couldn’t fulfill all of my obligations to everyone, and try that much harder to please everyone.

Now, my attitude is that life is meant to be enjoyed, not worked through.  I have learned to delegate tasks around the house to my children, instead of trying to do it all myself.  I cut down on my outside activities drastically, even having to drop out of our choir in church for a while.  I am still learning how to pace myself, and to understand that being ill is not my fault.

In knowing this, I am past feeling guilty about the things I can’t control.  Because God is my priority, my trust and help lie in Him, so I am taking life as it comes, while my faith is in Him.

2166 (Amy) What is your favorite holiday tradition and why?
mama-full (jesus reigns) Christmas is on the top of my list.  My favorite holiday tradition is my family and I going to our candlelight services at midnight at our church on Christmas morning.  We usher in Christmas by singing Christmas songs and lighting candles in a circle around our church, each member holding a candle.  It is our way of putting Christ first for the day, and acknowledging that this is our first priority.  It gives us a sense of togetherness, love and unity.
2166 (Amy) What features of PatientsLikeMe do you use most?
mama-full (jesus reigns) I use the update pages the most.  It is very handy, because I can keep track of my symptoms whenever I want to.  I also like the way that I can use this to print off [my updated history] for my doctor’s appointment.
2166 (Amy) Thanks so much for sharing, jesus reigns!

Treat Us Right: Comparing Cymbalta and Lyrica in the Fibromyalgia Community

Posted December 16th, 2010 by

Since its launch in November 2008, our PatientsLikeMe Fibromyalgia Community has served as a place for more than 11,000 fibromyalgia patients to share with, find, and learn from others.  Over the past 2 years, thousands of you have reported using Pfizer’s Lyrica® and Eli Lilly’s Cymbalta® as prescribed treatments for your fibromyalgia.

PatientsLikeMe recently analyzed the experiences you’ve shared in our Fibromyalgia Community about Lyrica and Cymbalta.  Here are three key insights we learned:

  1. Many of you experience little efficacy from either treatment. More than 40% of Lyrica patients and 50% of Cymbalta patients on our site perceive slight to no efficacy or simply cannot tell.  By comparison, only 20% of Lyrica patients and 15% of Cymbalta patients on our site perceive major efficacy.
  2. efficacy

  3. Those of you using Cymbalta experience fewer side effects than those of you using Lyrica. 26% of Cymbalta patients on our site report no side effects, versus 16% for Lyrica. Additionally, 29% of Lyrica patients on our site report severe side effects, versus 19% for Cymbalta. It is not surprising that more Lyrica patients than Cymbalta patients discontinue treatment and do so more quickly.
  4. sideeffects

  5. Many of you attribute weight gain to Lyrica. In fact, of all side effects reported for either treatment, weight gain on Lyrica was the most frequently reported. By contrast as shown below, Cymbalta patients on our site did not frequently report weight gain as a side effect.
  6. weightgain

So what makes this data interesting?

  • There remains a clear unmet need for developing better treatments in fibromyalgia. Based upon your real-world experiences, the existing treatment options are effective for only a minority of patients but cause side effects in a majority of them.  Developing new solutions for fibromyalgia that improve upon the safety and efficacy of existing treatment options remains an opportunity.
  • This data provides important insights for those of you using – or considering using – one of these treatments. From what you’ve shared with us on PatientsLikeMe, we see that Lyrica patients more frequently report both major efficacy and severe side effects than Cymbalta patients.  Additionally, you frequently report experiencing little to no efficacy on either treatment.  One of the major benefits of sharing is how much it helps others like you know what to expect and whether or not an experience on Lyrica or Cymbalta is normal.
  • This data illuminates similarities and differences between clinical trial data and real-world data. For example, weight gain in fibromyalgia patients was listed as a side effect in Lyrica clinical trials.  However, other side effects were more frequently reported in Lyrica clinical trials than weight gain, including dizziness, somnolence (daytime sleepiness) and headaches.  By contrast, your real-world experiences put weight gain atop the list of Lyrica side effects on PatientsLikeMe.  It’s important that we continue to develop a deeper understanding of the factors driving these similarities and differences in clinical trial data and real-world data.

Learning about the impact treatments have in the real world is only made possible by patients like you who embrace openness and give selflessly to other patients on PatientsLikeMe.  You are proof positive that the voice of one patient can become the voice of many, and that your real-world experiences are not only meaningful – they are essential to understanding what works, what doesn’t, and what needs to be improved.

You keep on saying it and we’ll keep on relaying it:  Treat Us Right.

PatientsLikeMe member cfidyk


Treat Us Right: Mapping What Patients Think About Medications

Posted December 15th, 2010 by

One of the ways we can better understand whether you, as patients, are having a positive or negative treatment experience is to “listen” to the conversation you’re having in our forum.  By understanding whether you are having a positive, negative, or neutral experience with a particular treatment you are taking or are considering taking, we can measure the impact of different events on the overall community.

For example, in 2008 we measured the impact on our multiple sclerosis community of a corporate announcement by Biogen about a serious and sometimes fatal side effect of Tysabri (occurs in about 1 in 1000 patients).  The results revealed that patients were indeed frightened by the announcement, but these patients were also so positive about Tysabri’s benefits, that most planned to continue taking the medication regardless of the risk.

Visualizing Perception of Sentiment
We visualize movement in your sentiment via perceptual maps and longitudinal bar charts.  The perceptual map here shows how patient perception (indicated via forum conversations in one disease community) is moving regarding different medications over four periods of time. (Note: each color represents one medication;  the shading represents the change of perception over time with the darkest shade being most recent).  From period to period, it becomes clear which medications you perceive work the best (i.e., Medication D for efficacy) and those that have the most side effects (i.e., Medication A for safety).

chart1

A stacked bar chart graph is a way to further break down the sentiment.  For example, the chart below shows the volume of posts about Medication E’s perceived efficacy, whether positive, negative, or neutral by month over time.  This visual allows us to evaluate if certain events impact your perceived efficacy of a particular medication; to create this graph, we look both at volume of posts (spikes) as well as proportion of posts by sentiment (colors).

chart2

Why is that important?  Because studies have shown that people who stay on their medications long term get the best health outcomes.  By measuring patient sentiment of discussions, we can predict if patients may discontinue taking their medications and why.  Knowing that, along with the information you share as part of your profiles, helps in research of how outcomes change over time and the impact of peer influence.

These methods are also used in creating our PatientsLikeMeListenTM service for industry partners.  Their interest is in understanding aggregate perceptions and what influences patient behavior so that they can keep patients like you on medication.  As part of this service, we show them which types of patients are most likely to stay on medication appropriately and which ones might be better off changing medications.

Our goal in analyzing patient sentiment overall and providing the PatientsLikeMeListenTM service for industry partners is to amplify your voice to anyone listening:  Treat Us Right.

PatientsLikeMe member dwilliams


Treat Us Right: Comparing our Community to the General Population

Posted December 14th, 2010 by

Our recent series entitled Share and Compare focused on how patients like you can better answer the question, “How do I put my experience in context?” The answer, in part, comes from how much information you share to help create that context of real-world patient experiences.  Think of it this way – with every piece of information you share, you are contributing directly to research.

When we’re conducting research, one of the things we look at is how similar or different you are to the populations at large.  We even have minimum criteria for a person’s data to be usable.  For example, if you indicate whether you’re male or female, you make it that much easier in determining how you “fit in.”  That one piece of information helps us know if our population is in fact representative of a disease, or whether we’re only getting one specific type of patient (e.g., males with fibromyalgia who don’t have much pain).  If we do get more of one type of patient, it becomes more difficult to draw any conclusions from that population and apply them to the general public.

So, you may be wondering why we need to compare to the published literature/general public?  Why can’t we just say that our conclusions apply to our users and leave it at that? The answer to this question has many parts:

  1. We have the ability to positively impact everyone with disease, not just our current members.  Ideally, we will apply knowledge gained through research in our communities to all people living with diseases.
  2. From a research perspective, we have to know our biases, and how to correct for them if possible. For example, we tend to have more women than men in our populations.  By knowing that, we can “correct” for it in our analyses by making sure our proportions are correct when we look at a sample of users.
  3. We can know how our discoveries fit in with other information known about a disease.  For example, let’s say we figure out that patients who have had fibromyalgia for 15+ years improve their quality of life by doing Treatment X.  If we don’t know how many patients have had fibromyalgia for 15 years or how many do Treatment X and don’t improve, the discovery loses some of its power from lack of context.  Perhaps it isn’t a discovery at all!  However, if we have data from our community to answer those questions and can compare it to published literature, we can trust more in our discoveries.

Here’s a great example of what can happen with the data you share.  Recently, we evaluated our fibromyalgia community characteristics with the Demographics Survey sent out early in 2010.  For some of our communities, the survey had fantastic results.  We are now able to declare with confidence that our community very closely matches the fibromyalgia community at large (Table 1).

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By maintaining your profiles and keeping accurate records of side effects, medications, background information, and outcomes (such as quality of life), you are participating in groundbreaking research that is already yielding fantastic results. Our research team has presented at prestigious conferences and written dozens of abstracts and papers. Working together, PatientsLikeMe has discovered new symptoms and compared treatment efficacy; we are also working towards creating an accurate picture of how medications work in the real world so you get the right treatment for you. This is just beginning.

PatientsLikeMe member cbrownstein


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.

One for All: The PatientsLikeMe “Welcome Wagon”

Posted December 8th, 2010 by

plm_ms_comments_diamondlil582

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.

plm_fibro_comments_babsie

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 member jcole


One for All: The Connected Community of PatientsLikeMe

Posted December 7th, 2010 by

Comments between Epilepsy patients on PatientsLikeMe

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.

Personal Messages between Patients on PatientsLikeMe

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.)

PatientsLikeMe member jcole


Share and Compare: Be a PRO! Understand Your Experiences in Context

Posted December 6th, 2010 by

This week on our blog, we’ve been highlighting how patients like you are putting their experiences in context.  With the launch of InstantMe and some of the design updates you read about, you can see we’re listening to your call for more functionality that lets you understand how your condition affects the whole you.

Patient Reported Outcomes (PRO) questionnaires are a great tool to illuminate the physical, mental, and social dimensions of your overall health. In fact, PROs are increasingly used in clinical trials, and in December 2009 the FDA approved the use of PROs to support product claims. Best of all, PROs are free of clinical interpretation, which empowers you, the patient, to have your voice heard in the real world.

PatientsLikeMe is an unparalleled platform for electronic PROs, which have a few advantages over traditional pen-and-paper ones, such as:

  • Patients are more likely to share and share truthfully using electronic interfaces;
  • Researchers have real-time access to the data;
  • Electronic PROs enable alerts for specific concerns (such as adverse side effects), ensuring better safety for all patients (1).

Early on in our partnership, our colleagues at the biopharmaceutical company UCB proposed a longitudinal PRO survey: members of our Epilepsy Community would have access to surveys that reveal the effect of their condition on everyday life over distinct periods. That’s right — you could see your progress over time! Together with UCB,  we decided to take the concept of an electronic PRO one step further: not only would you be able better understand your own experience with epilepsy, but you would also be able to put it in context. When you complete a PRO survey, you’ll see that you can compare your results to the larger Epilepsy Community!

Figure 1

qol1

Figure 2

proresults-forblog

Such commitment to patient health reveals two interesting things about UCB: First, patients really do come first; and secondly, UCB is committed to understanding how their products work in the real world, and not just in clinical trials. It is not easy to take a leadership position in an innovative arena such as this, and we are proud to partner with such a company.

screen-shot-2010-12-03-at-95803-amAs of today, members of our Epilepsy Community have completed more than 1,300 PRO surveys. By the end of 2010, many of you will have contributed to the largest patient-led study ever in epilepsy.

Are you in on what our communities already know?  Share…and then compare. If you understand your condition in the broader context, you’ll be a PRO too.

1. Dupont et al. “Use of Tablet Personal Computers for Sensitive Patient-Reported Information.”  Journal of Supportive Oncology. Volume 7, Number 3. May/June 2009.

PatientsLikeMe member AMGraham