The Value of Openness: The PatientsLikeMe Blog

Last November, we shared our takeaways from TEDx Cambridge, a one-day event featuring 30+ speakers and lots of Ideas Worth Spreading (TED’s mission).  The theme for this particular gathering was “Thrive.”  How can we as individuals – and communities – not just survive but thrive?

One of the speakers to take a crack at that question was PatientsLikeMe Co-Founder and President Ben Heywood, who talked about the story behind PatientsLikeMe.  In addition to sharing how it all began with his brother Stephen’s diagnosis with ALS, and what PatientsLikeMe is trying to do (“a revolution of openness”), Ben focused on how we can thrive as a company against big expectations – both external and internal.

Tune in to the video below to find out just that.  Congrats to Ben on an inspiring talk – not to mention his standing ovation!

Many people look at a new year as a fresh start - a chance to begin new routines, eliminate bad habits and shift priorities.  But not everyone believes in making resolutions.

Here are several different patient perspectives on approaching the new year:

• “In 2012, I will make daily exercise a priority. Research reveals it is the one thing that may slow disease progression. It also improves overall health and makes us look and feel better.”   - Patient with Parkinson’s disease

• “I am filled with great hope for us all. In 2011, the pace of research breakthroughs increased dramatically. Most importantly, new research modalities using human tissue have been developed and are already contributing to major breakthroughs in understanding the biopathways affecting ALS. We are closer to a cure than ever.” - Patient with ALS

• “My resolutions are pretty simplistic:  Sleep hygiene and getting more (sleep, that is). Discontinuing the practice of making long and unrealistic to-do lists.  I’ll start with sleep and go from there.” - Patient with major depressive disorder

• “I have no expectations that this new year will be any better then the last. That way I don’t get disappointed so whatever does happen will be a bonus.”  - Member with Wegener’s granulomatosis

• “I’m going to cut out sugar and white flour foods.  I know, I know, I’ve said this before and I’ve done this before, and it’s really hard for me, but it works for weight loss and being able to tap into my energy.  So here we go again, looking towards a healthier 2012.” - Patient with fibromyalgia

• “My resolution is to do more, no matter what it is.  Smile more, laugh more, cry more, walk more, yoga more, love more, hug more, write more, hurt more, sing more, read more…you get the idea.  I figure more means I’m alive, less may mean I’m dying.” - Patient with Parkinson’s disease

What will you be doing differently in 2012 - if anything?  Share your thoughts in the comments section and read more about exercise, diet and sleep at PatientsLikeMe.

The holidays are a time for thinking about everything you hope and wish for in the coming year.  They’re also a time for appreciating everything you already have.  As our season’s greetings to you, we wanted to share a wish expressed by each member of our management team.

“I wish for every patient and family dealing with illness to know that they are not alone and that we are all in this together.” – Ben Heywood, President and Co-Founder

“I hope Santa brings you all your health data and that you will share it with other patients like you!” – Paul Wicks, PhD, Research & Development Director

“I wish for people to have the most happy, healthy, and joyous holidays filled with the unparalleled love from those who matter in their lives.” – David S. Williams III, Chief Marketing Officer and Head of Business Development

“My wish for patients everywhere is that they continue to learn about their chronic conditions and keep updated on the latest treatments from multiple sources.” – Robert Palladino, Chief Financial Officer

“All of us at PatientsLikeMe wish you and those you love a holiday of joy and grace.” – Jamie Heywood, Chairman and Co-Founder

Happy Holidays!

It’s the most wonderful time of the year.  Or is it?

The holidays can be a time of merriment and joy marked by festive parties and family reunions.  But they can also be quite challenging.

Despite the great cheer advertised everywhere you look, some people find themselves struggling with stress, anxiety, loneliness and/or depression.  This phenomenon is sometimes called the “holiday blues.”  Add to that things like fatigue, insomnia and seasonal affective disorder (SAD) – which affect many PatientsLikeMe members on a regular basis – and you have the recipe for a perfect holiday storm.

Here’s a look at how our patients are attempting to cope with the stresses of the season:

• “Seeing all the lights, the preparations, the shopping for the holidays makes me dread what is coming.  I try to go to low-key places where there isn’t as much traffic and aren’t as many people.  I try to play down the importance of everything so I don’t become so obsessed with choices and opinions.  I take breaks.  LOTS of breaks.  I try to make sure I take them before I even become overwhelmed in the first place. And I try to find free things to replace some of the costs – either as presents or activities.” – Patient with major depressive disorder

• “Having family meet on a major holiday is enough to upset the emotional applecart so to speak.  Try just to do an average job of cooking, it doesn’t have to be perfect.  Take a break when you can…get involved in objective projects: carefully following a recipe or cooking something with your mind fully on it can help calm panic attacks.  If you are doing your best, that will be the best you can do.” – Patient with Parkinson’s

• “It puts a lot of stress and pressure on me. I have three children who get a lil’ demanding, and then a husband who expects me to travel with three demanding children and then stay at relatives’ tiny houses, etc. The noise, the gossip, the fake hugs from relatives who really do not like me, it all honestly just ‘gets to me.’ But this year, I’m taking my power back by saying NO to the parts of the holidays in which I do not want to participate.” – Patient with bipolar I disorder

• “Sometimes I get depressed because I’m usually one of those people who have to get assistance to give their children gifts for the holidays. I also get depressed because I don’t look the way I want to (I am overweight) and do not want people to see me like that. So the gatherings can be nerve wracking for me. [But] I am learning to let go of the ‘shoulds.’ Not easy, but it can be done.  If I am really not feeling up to something (I get exhausted really easily), then I allow myself to not go, or not run the thing like I used to, or only bring one thing instead of 3 or 4. Pacing myself has been a good thing to learn.” – Patient with fibromyalgia

Are you feeling signs of the “holiday blues”?  Are the demands on your time and your pocketbook starting to overwhelm you?  Before you pack up the car or welcome any house guests, check out these great tips from the Mayo Clinic for getting through the holidays with as much joy as possible.

Please meet multiple sclerosis (MS) patient hotmama08, who led a PatientsLikeMeInMotion-sponsored team that included two four-legged advocates at Walk MS in Columbia, SC, on May 14, 2011.  We especially love how the team member to the right wore bright blue shoes to match her PatientsLikeMeInMotion t-shirt!

Congrats to hotmama08 and all of our PatientsLikeMeInMotion-sponsored teams for your efforts to raise funds and awareness for your health condition. We’re honored to support you every step of the way. For more PatientsLikeMeInMotion team photos, check out our growing Flickr slideshow.

Thinking about organizing a team for next spring?  Learn more about the PatientsLikeMeInMotion program today.

What’s it like to work at PatientsLikeMe?  We’ll be revealing just that with our new blog series “A Day in the Life,” which features various employees from different departments.  To start this new series off with a veteran perspective, we interviewed Research Scientist Mike Massagli, PhD, one of the longest tenured employees of the company.  Find out what changes he’s witnessed since joining PatientsLikeMe in June 2007.

1.   What’s it been like to watch the company evolve over the last four years?

It has been both interesting and gratifying.  Interesting to watch how we evolved from our initial communities – ALS, MS and Parkinson’s, all essentially neurological conditions – to come to grips with other types of chronic disease and to try and achieve a necessary balance between general tools that would be useful to any patient and disease- or condition-specific tools that will be relevant to patients when they are needed.  What has been gratifying is that we have always been able to find people to rise to these challenges.  We’ve found users of PatientsLikeMe very willing to help (and forgiving when things haven’t gone perfectly smoothly), so that we are now in a position to provide all patients with the potential benefits of PatientsLikeMe.

That’s still a work in progress, of course, but the site is getting better all the time.  I am optimistic that we are getting closer to realizing the ultimate power of PatientsLikeMe, which is to fully show the distribution of responses to treatments and help match patients to the part of that distribution that is actually relevant to them.

2.  Talk about PatientsLikeMe’s Journal Club speaker series and why you started it.

The Journal Club is something we started in January 2009 to provide some space and time outside of the routine workflow to discuss (usually) substantive topics relating to PatientsLikeMe.  The goals include:

• giving people who are working on something behind the scenes some visibility and an opportunity for feedback;
• sharing research that has implications for the data we collect or how we collect and present it;
• talking about features in other websites that could have utility in PatientsLikeMe
• sharing information or ideas about how to foster the growth and ‘health’ of online communities; and
• presenting intriguing solutions to seemingly technical problems that may have broader implications for the user experience.

We also bring outside speakers who can inform these areas of discourse.  Everyone at PatientsLikeMe attends and is enthusiastic about learning and critically examining new ideas and issues.

3.  What research projects are you working on at the moment?

At the moment I’m finishing up a couple of projects focusing on the experience of organ transplant patients.  For one of them I examined forum posts about issues related to medication adherence, then combined this with a review of the literature and prior measures of adherence problems to design a survey that will provide information describing patient preferences for possible adherence support mechanisms.  In the other project, a survey is being conducted to test a range of questions about patient quality of life that will hopefully result in a more patient-centered set of questions than currently exists.

In addition to those projects, I’m looking at survey data about six-month changes in the status of fibromyalgia patients and testing how that is associated with the use of PatientsLikeMe.  And I’m working with the team to implement revisions to the Multiple Sclerosis Rating Scale (MSRS).

4.  What do you like best about being part of the PatientsLikeMe team?

Being part of the PatientsLikeMe team is a unique opportunity to build something that has the power to vastly improve medicine.  By capturing patient reports of their experience of care and treatment on a large scale and in real time, we can improve understanding of how treatments work and for whom they work IRL (in real life), and be a source of information for people that simply has not existed before.

““““““““““““

Interested in making a difference in patients’ lives?  Check out our Careers page to see our current job openings.  Headquartered in Cambridge, Massachusetts, PatientsLikeMe is looking for a Senior User Experience Designer, Marketing Associate, Research Analyst and more at the moment.

Thanksgiving is a time for remembering all the reasons you have to be grateful.  For patients who face numerous health challenges, this can mean reminding yourself of all the things you have gained – not lost – since your diagnosis.

One theme that we’re especially proud to hear our 120,000+ members express is how thankful they are to have found a community of people who truly “get” them at PatientsLikeMe.  Our founders envisioned a way to connect patients with others just like them – so they could learn from each other, support each other and help accelerate the pace of medical research – and today, it’s become a reality.  Touchingly, it’s also been the start of many important friendships among our members.

Here are some patient stories that moved us this year:

• “The people on this site deserve more than a simple thank you from me.  The night I found PatientsLikeMe was about eight hours after my neurologists had told me, ‘You have non tremor Parkinson’s disease.’ That night I had some stinking thinking going on.  I considered myself a freak.  Thanks to this site I now consider myself unique.  We are all unique. To my Parkinson’s brothers and sisters, a big THANK YOU for helping me get away from my stinking thinking.”  – Patient with Parkinson’s disease

• “This is the place where we can wonder what is next, cry about what is now and rant about how unfair it all is to us.  Here we are among friends and patients just like us who know have been there or will be going there. It is so much better for me to be on PatientsLikeMe then to just rant to my family and boyfriend.  I figure we can all listen to someone’s rant as tomorrow it may be us.” – Patient with ALS

• “I called one of our members for the first time.  We were on the phone for over three hours!  Every connection I’ve made here that has progressed to the phone call stage has been like that.  This is the best, most fun, most supportive group of guys and gals that I think I have ever come across.  At PatientsLikeMe, we may all come from different walks of life, different locations and yes sometimes different opinions, but here we share such a unique and caring bond.  I’m so lucky to have found PatientsLikeMe.” – Patient with fibromyalgia

• “I have found that I am better able to deal with my moods now that I am able to relate to others with the same/similar problems. It helps to rant. It helps to talk with people who understand. PatientsLikeMe has helped me to understand myself better too. YAY. I love PatientsLikeMe.” – Patient with bipolar II disorder

• “In large part, my success at escaping that life of depravity, depression and addiction is due to the sense of belonging I found at PatientsLikeMe. I was encouraged, and loved and, yes, even put in my place a few times. Even though my path has been neither straight nor smooth I feel that I have my friends on PatientsLikeMe to thank for the sunlight in my life.” – Patient with HIV

No one should have to go through the experience of chronic illness alone.  If you’ve already realized you’re not alone in your journey, we give thanks for you…and every patient like you.

Happy Thanksgiving!

“The true strength of the American family finds its roots in an unwavering commitment to care for one another.”

– President Barack Obama

November is National Family Caregivers Month, “a time to thank, support, educate and empower family caregivers.”  There are more than 65 million family caregivers in the US who day in and day out fulfill a vital role on the care team for a family member.  They also tend to be the most knowledgeable person when it comes to daily treatment, diet and exercise regimens for the person they love.

The theme for National Family Caregivers Month 2011, sponsored by the National Family Caregivers Association (NFCA), is “Identifying Family Caregivers.”  The goal is to encourage both caregivers and medical providers to ask for a designated space on every medical intake form for a caregiver name.  Otherwise, the NFCA argues, caregivers are “invisible in American healthcare.”

In contrast, caregivers play an important and prominent role in PatientsLikeMe’s “CareTeam” concept, which was developed to include everyone who is actively involved in the care of our patient members.  That could be a spouse, partner, parent, child, doctor, home health worker, relative or friend.  Patients can invite anyone on their real-life CareTeam to join PatientsLikeMe and be linked directly to their profile.

Currently, there are more than 7,000 caregivers using PatientsLikeMe.  (Browse their profiles.)  Here is a sampling of their stories and situations:

• “I am a mother who would like to know more about bipolar disorder and know how I can help my daughter, and let her know I care.”

• “I am a caregiver for my wife, who has generalized epilepsy. I have allocated a big part of my life to help my wife become more stable.”

• “In 2005 my husband was diagnosed with young onset Parkinson’s disease and through my desire to be the best caregiver possible I forgot about me.”

• “My husband was diagnosed with ALS at age 47 in June 2007 on our 25th anniversary.  It’s hard to see not only his body deteriorate but his spirit too.”

• “For decades, I have been caring for members of my family and community regarding mental illnesses and life challenges, mostly my beloved auntie.”

• “On July 6, 2008, my partner got results saying he was HIV positive. It was a hard night for us, we cried and talked and cried some more.”

• “I am 30 years old. I am one of the caretakers for my father who was diagnosed with ALS when I was 8 years old.   I try to be there for him as much as he needs.”

Are you a caregiver?  We encourage both you and the patient in your life to join PatientsLikeMe to share your experiences, find support and learn from other patients and caregivers.

Now that daylight savings time has ended, the days are shorter, and before you know it, it’s nightfall.  Has this affected your mood?

Seasonal affective disorder (SAD), also known as seasonal depression, is a condition marked by a period of depression that occurs during the same season year after year.  In most cases, that season would be fall through winter (when there is less sunlight), but for some people, SAD can occur during spring or summer.

One of the best ways to learn “what’s normal and not normal?” with SAD is to compare your experiences with other patients. There are 123 patients with SAD at PatientsLikeMe, with 85% of them female and 15% male.  A commonly reported treatment is light therapy, or the use of a special light box that exposes you to bright light.  This mimics the effect of natural outdoor light and appears to cause a change in brain chemicals that positively affects your mood.  (Does it really work?  Check out the 27 treatment evaluations for light therapy that our patients have submitted.)

What’s it like to live with SAD?  Here are some first-hand reports from members of our mental health community, who answered the question “What are your SAD symptoms?”

• “My symptoms tend to be worsening depression and anxiety.  There are no ‘indicator’ symptoms for me - meaning I don’t realize necessarily ‘Oh I’m starting to feel SAD, crap!’  But all of my Major Depressive Episodes (five so far since I was 20) have occurred in November and December.  And looking back, I can see a downward trend in especially depressive symptoms getting worse starting in mid October - such as depressed mood, more frequent crying spells, fatigue, worse insomnia, headaches worsen, weight and appetite changes, and urges to self-injure.  Three of my Major Depressive Episodes led to suicidal thoughts and short hospitalizations.  The other two, I had frequent suicidal thoughts but did not feel in danger of acting upon them.” – Member with panic disorder

• “[Symptoms are] mild now, but they ran the spectrum from comatose to the walking functional. Kids don’t understand, and our school bus arrived at 6:00 a.m. Needless to say they weren’t hungry, food on the bus = school contraband, so I’d whip up scrambled eggs with cheese and wrap them in a taco shell and tell them to sneak a bite when they got hungry. They just threw them in the bushes for the local dogs to eat. Then I’d watch TV and answer the ever increasing phone calls all day long. If I felt OK, I’d start to prepare for the tornado that was spring.  Nowadays since I don’t have so much responsibility, my symptoms seem mild, but that could change depending on the winds of life events.” – Member with bipolar II disorder

• “I think it varies year to year in terms of severity.  The March/April period is characterized by an increase in my anxiety levels together with restlessness and restrictive eating. The September/October period is characterized by an increase in my feelings of sadness along with intense carbohydrate cravings and a need to sleep more.  Both periods are marked by problems concentrating.  I notice that the light box really helps with the carbohydrate cravings. I think it might even make me less hungry overall.  It’s not that the cravings go away entirely, but instead they are dampened to the level where I *don’t* find myself eating cookies without realizing how I got them.” – Member with major depressive disorder

Wondering what else they patients have to say about SAD?  Or think you might experience the condition yourself?  Join PatientsLikeMe and take part in this ongoing SAD forum discussion.

FOR IMMEDIATE RELEASE

PatientsLikeMe Continues Report Series on Real-World Patient Experiences with Multiple Sclerosis Medications

CAMBRIDGE, MA - November 3, 2011 - In the second report of a series on Multiple Sclerosis (MS) disease modifying therapies (DMTs), PatientsLikeMe reveals that MS patients perceive Copaxone as having comparable efficacy and tolerability profiles to the interferon therapies Avonex and Rebif.  However, all three medications are perceived as trailing in efficacy and tolerability to Gilenya, Tysabri and Betaseron.  In the report’s analysis of 3,200+ patient conversations about MS DMTs from January-June this year, PatientsLikeMe also finds that Copaxone is perceived as safer than other MS DMTs.

“Patients’ sharing of their Copaxone experience may adversely affect its demand as a first line therapy since patients are becoming more influential in their treatment decisions,” says David S. Williams III, Chief Marketing Officer at PatientsLikeMe. “What has become clear through these reports is that real-world evidence will have a major impact on relative pricing for MS DMTs and play an increasingly important role in access decisions.”

This 46-page report - entitled “Does Copaxone patient experience in the real world justify its value?” - quantitatively and qualitatively analyzes 4,100+ MS patients with experience using Copaxone.  Other report sections include:

• The Patient Voice in Treatment Discussions: Copaxone was discussed in 25% of all patient conversations about MS DMTs.
• Copaxone Efficacy and Side Effects: Of the 1,100+ MS patient evaluations on Copaxone’s efficacy and side effects, 30% reported experiencing “moderate” to “major” efficacy, while 26% reported “moderate” to “severe” side effects.
• Copaxone Price vs. Value: Is this medication appropriately priced compared to other MS DMTs given real-world evidence regarding efficacy and side effects?

The report is available for purchase at http://partners.patientslikeme.com/copaxone-report; a free abstract is available for download.

Note to Editor:  All data cited from this report must be sourced as originating from PatientsLikeMe®

About PatientsLikeMe

PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on www.twitter.com/PatientsLikeMe and http://blog.patientslikeme.com]

PatientsLikeMe member MLR was an avid BMX (Bicycle Motocross), MTB (Mountain Bike Racing) and Motocross athlete his entire life – until he was diagnosed with multiple sclerosis (MS) last year. After having to give up the sport he loved, MLR began to suffer from depression. Today, however, he’s happy to report that he’s racing again thanks to an amazing turn of events. Check out his incredibly moving story below.

1.  How did you and your family react to your MS diagnosis?

It was very tough when we found out it was MS that was causing all these problems and keeping me from training and racing. My family traveled with me always, and it was like going on vacations every month. We were a racing family.

2.  How have you adjusted to living with MS – and what tips do you have for newly diagnosed MS patients who identify as athletes?

The hardest part for me was accepting the fact that I was not going to be able to race and do most of the things I had done for so many years. But my family didn’t give up on me like I did. They pushed me through the depression, and my faith in God carried me through my deepest valleys and set me on the mountain tops to see what my life could still be. As athletes, we just have to keep that drive. We have to compete and make adjustments and keep competing. Compete against the odds and against MS itself.

3.  You have a new gravity downhill wheelchair that you’re racing now.  How did that come about, and what’s it like to race in one?

My new gravity wheelchair is a blast! It was built by Active Force Foundation, with four wheel independent suspension (6.5″ of travel), four wheel disc brakes and all built out of aluminum. It is so fun to ride and race.

The greatest thing about this chair is how I received it. My two daughters started talking to people in our sport of BMX about my disease and how it had really taken its toll on me and how depressed I was that I couldn’t ride a bicycle any more. So over about a year to a year and a half, the whole BMX sport joined with them and raised the $11,000 to buy me this 4Cross DH chair. When they presented me with the concept of getting this chair, I was overwhelmed at the love and support from not only my two awesome daughters but also from my fellow racers and BMX family. The family of BMX is worldwide. Needless to say I cried like a baby for the support and love I felt from these wonderful people.

I ride my awesome DH chair every chance I get.  Although they aren’t very many races for these chairs, I have so much fun showing up to race events and showing the chair off and letting people sit in it and sometime letting people get pushed around a parking lot in it. So if you ever get a chance to go see some BMX racing or you know someone in BMX, know that it is a great sport and the people are a loving and caring group. By the way, BMX is an Olympic sport, and you can see it again in the 2012 London Olympic Games!

Have your health conditions ever caused you to lose a job? Or prevented you from applying – or getting hired – in the first place?

October is National Disability Employment Awareness Month, an event that aims to recognize the skills that those with disabilities bring to the workforce and promote employment opportunities and access for those with disabilities. The issue, of course, is that discrimination, employment barriers and higher rates of unemployment remain ongoing concerns for Americans with disabilities.

Here’s what the White House’s Presidential Proclamation has to say about these troubling statistics:

“More than 20 years after the signing of the Americans with Disabilities Act (ADA), individuals with disabilities, including injured veterans, are making immeasurable contributions to workplaces across our country.  Unfortunately, the unemployment rate for people with disabilities remains too high — nearly double the rate of people without disabilities — and reversing this trend is crucial.” - President Barack Obama

Last week, we featured a post about wheelchair barriers and hazards and asked readers to appraise their neighborhood for wheelchair accessibility. Today, we ask you to think about the barriers to employment that might exist for people with disabilities – both physical and mental – in your workplace. Would you say your work is “supportive” and “inclusive,” as the Presidential Proclamation states is the goal?

Whether you’ve faced job discrimination or noticed a potential barrier at work, we encourage you to share your stories in the comments section.

For someone who uses a wheelchair, there are barriers and hazards everywhere – things that others may not see. But how do you raise visibility of the issue?

One of our longtime MS members, gamma, decided that a photo essay of the obstacles that exist in her neighborhood (considered a wheelchair-friendly community) and others would the best way to illustrate the problem. “My hope is that when this presentation is completed I can get it into the hands of people that can use it to raise awareness about unsafe situations for the wheelchair or stroller user,” she says.

What’s an example of a hazard or barrier? Wheelchair users at PatientsLikeMe – who number more than 1,300 and use both powered and manual wheelchairs – report having difficulty with potholes, cobblestone entrances, uneven sidewalks, narrow aisles, yellow bumps on ramps, heavy doors and more. But it’s easier to “see” these hazards and barriers than just list them. That’s why gamma is calling for photo submissions.

Have you encountered something in your neighborhood that would pose problems for a wheelchair user? Snap a photo to aid this grassroots patient project. Then send it to shalegamma@aol.com along with your full name for credit. Thanks in advance for your contribution!