13 posts from April, 2014

Speaking up for hope during ALS Awareness Month

Posted April 28th, 2014 by

May is just a few days away, and we wanted to get a jump-start on spreading the word for Amyotrophic Lateral Sclerosis (ALS) Awareness Month. As many out there might know, PatientsLikeMe was founded on the life experiences of brothers Stephen, Ben and Jamie Heywood. In 1998, Stephen was diagnosed with ALS and his brothers went to work trying to find new ways to slow his progression. But their trial and error approach just wasn’t working, and so they set out to find a better way. And that’s how in 2004, PatientsLikeMe was created. If you don’t know the story, you can watch the feature documentary of the family’s journey, called “So Much So Fast.”

ALS is considered a rare condition, but it’s actually more common than you might think – in the United States, 5,600 people are diagnosed with ALS each year, and as many as 30,000 are living with the condition at any given time.1 ALS affects people of every race, gender and background, and there is no current cure.

Even before PatientsLikeMe, Jamie started the ALS Therapy Development Institute (ALS TDI), an independent research center that focuses on developing effective therapeutics that slow and stop ALS. Now, it’s the largest non-profit biotech solely focused on finding an effective therapy for ALS. And on May 3rd, “The Cure is Coming!” road race and awareness walk will be held in Lexington Center, MA, to help raise funds for ALS TDI. There’ll be a picnic lunch, cash prizes for the road race winners and live music. Last year, over $110,000 was raised for ALS TDI – if you’re in the neighborhood, join the race today.

Also, the ALS Association (ALSA) sponsors several events during May, and this year, you can:

Back in January, we shared a special ALS infographic on the blog – the PatientsLikeMe ALS community was the platform’s first community, and now, it’s more than 6,000 members strong. If you’ve been diagnosed with ALS, there’s a warm and welcoming community on PatientsLikeMe waiting for you to join in. Ask questions, get support and compare symptoms with others who get what you’re going through.

Keep an eye out for more ALS awareness posts on the blog in May, including an interview with one of our ALS members.

 Share this post on twitter and help spread the word for ALS Awareness Month

 


1http://www.alsa.org/about-als/facts-you-should-know.html


A day in the life of Software Engineer Jonathan Slate

Posted April 25th, 2014 by

Our members share a lot about their unique health journeys and experiences here on the blog. Just recently, Kim spoke about her shock with MS, Betty talked about her frustration finding the right diagnosis, and Lori’s been sharing about life on the lung transplant list. And as part of our ongoing “A day in the life” series, PatientsLikeMe Software Engineer Jonathan Slate shared about his own recent journey after his son Nolan’s hand injury. He walked through the whole experience, from Nolan’s initial accident to how a simple CD with some x-rays on it sparked an ‘ah ha!’ moment for him.

 

You started working at PatientsLikeMe about 6 months ago – tell us a little bit about what you do.

I work as a Software Engineer, developing new site features, fixing issues and working with other engineers to come up with creative solutions to the technical challenges of building and maintaining the PatientsLikeMe site. I’ve also done some work on the PatientsLikeMe Open Research Exchange project.

You’ve said you experienced two “eureka” moments at PatientsLikeMe – what happened, exactly?

Well, the first was on the PatientsLikeMe forums, where I found out, first hand, just how comforting it can be to share a difficult story with patients like me who can truly empathize with my own personal struggles. But it is the second eureka moment that I want to tell you about.

When I started working at PatientsLikeMe six months ago, I thought I basically got it. As a software engineer, there were a lot of opportunities available to me, but I chose to work at PatientsLikeMe because I could see they were an innovative company with a positive mission, passionate leaders, and energetic, thoughtful, and enthusiastic employees.

Then, a couple of weeks ago, my 12 year-old son Nolan was playing “crab soccer” in gym class. Crab soccer is like soccer, but played on all fours, with belly buttons pointing towards the caged lights in the gymnasium ceiling. Kids scuttle around trying to kick a giant ball without losing their balance. At some point during the game, Nolan bent his left hand back too far and heard a popping sound (ouch!). He went to the school nurse, and there was some swelling, so she gave him some ice and sent him back to class. Then came the sage advice of his fellow fifth graders, “It will feel better in one hour,” and “If you can move it at all, it’s not broken.” Wrong on both counts, as it turns out.

By the next morning it didn’t feel any better, and Nolan’s hand had swollen considerably. So we took him to the pediatrician. The doctor thought it was probably just sprained, but she ordered an x-ray just in case. When we met up with the pediatrician again, she showed us the images, and even to my untrained eye, there was a clear break. So they wrapped him up in a splint and gave us the contact info for a hand specialist. We left the office carrying a CD with the x-rays to bring to the specialist. Of course, being an engineer, I couldn’t help but think this system was a bit antiquated. Hand delivering a CD, I mean, really!?

But when we got home, my first thought was to pop the CD into the computer and get another look at the x-rays. I thought my wife might like to see them, as well. But when I put the CD into our home computer, there were just a bunch of weird files, no images as far as I could tell. After an hour or so of jumping through a number of technical hoops, I managed to get an application installed that could read the files on the disk. What came up wasn’t just some image files, but a medical record of sorts, with the images and a bunch of metadata. I showed the clearest x-ray to my wife. “Wow, that’s a pretty good break,” she said. “Can you send me that so I can put it on Facebook?” So I emailed it to her and I also printed out a couple of copies for Nolan to take to school and show to his friends.

The eureka moment didn’t come until I was on my way into work the next morning. Nolan and I had left the pediatrician with a CD full of useful medical data related to his condition, but the only reason we had it was so that we could deliver it to the next doctor. There was no expectation that we would actually want to look at the x-rays ourselves, and in fact doing so required technical skills beyond that of the average person. And if it had not been for the “antiquated” system in which CDs are delivered by patients, by hand, we never would have had the data in our possession at all.

How has Nolan’s experience changed your perspective on the relationship between healthcare, technology and data donation?

I know that a broken hand is small potatoes compared to what many PatientsLikeMe users have to deal with every day. But I still think there’s something to learn from this experience. Dealing with a broken hand is a pain. Nolan’s saxophone and drums are on hold. He can’t participate in all the outdoor activities he would like. But having those x-rays helps to make the experience a bit more tolerable. Having these images puts my wife, Nolan and I more in control. We have a better understanding of what is happening, and we can choose to share the information we have – how we see fit. And that is what PatientsLikeMe is all about: putting patients in control of their own health and data.

Finally, how is Nolan doing? Is he back playing drums and soccer yet?

Nolan is doing pretty well. His hand is in a splint, not a cast, which does make some things easier. And he got his friends to sign the velcro straps, so he didn’t miss out on the “fun” part of breaking a bone. But he can’t wait to get it off. Today I had to tell him he couldn’t go out and play baseball with his friends. But he can play soccer, as long as he doesn’t try to do any throw-ins. Drums and sax are still out, but he will be playing xylophone, one handed, in an upcoming school concert!

We’ll be continuing with more “Day in the life” portraits featuring PatientsLikeMe employees from different departments, so stay tuned for more! You can also check out some of our previous entries by clicking here.


Interested in joining our engineering team and making a difference in patients’ lives? Check out our Careers page to see our current job openings.


“Shocked” – Kim talks about life with multiple sclerosis, becoming an advocate and PatientsLikeMeInMotion™

Posted April 23rd, 2014 by

Last week on the blog, we celebrated the 6th year of the PatientsLikeMeInMotion program. And this week, we’re touching base with PatientsLikeMe member Kim (aka “2006”) who we’ve had the honor of sponsoring a bunch of times through PatientsLikeMeInMotion™. After she was diagnosed with multiple sclerosis (MS), Kim was inspired to get involved in advocacy and fundraising events with her now legendary team, Kim’s Cronies. She spoke with us about her diagnosis with relapsing remitting MS, the evolution and growth of her fundraising efforts and just how much the MS community on PatientsLikeMe means to her.

You were diagnosed with relapsing-remitting MS in 2006 – what was that experience like?

My experience with being diagnosed was probably like everyone else. “Shocked.” My symptoms started with visual changes. I had Lasik surgery done 3 years prior and thought that something was going wrong because of that procedure. I went to the eye doctor and he mentioned optic neuritis, and being in the health care profession, I knew that was usually in relation to multiple sclerosis. Already, my mind started racing thinking all about the negative things related to MS. Within a week, I went to see my MD and had an MRI, which did read MS. I was then referred to a number of specialists for further testing. This was a quick, life-altering diagnosis. So with this new diagnosis, I started to find out as much as I could about this disease. I went to a support group, talked to everyone who mentioned something about or knew someone with the disease, I read as much as I could about MS on reputable sites. I went to the National Multiple Sclerosis Society site and sent for hard copy information.

I was scared to have this diagnosis and thought I would be incapacitated in no time. But I did find out there were many new treatments out there and I needed to get on them ASAP. Once I started to get comfortable with this new diagnosis, I then started telling people about it, but that took at least a year or so before I was ok with it. My thought was I can either make the best of things and enjoy life, or give up. Everyone has issues at some point in their life. I came to the conclusion after researching this disease that I was lucky that it hit me at the age of 39 and not sooner.

I was so happy to learn about PatientLikeMe too. I’ll never forget that there was a segment on the news about your website. I remember jotting down the website and as soon as I got home, I accessed it and joined. I’ve found your site to be a great avenue to communicate with others and to find out how people are doing with different therapies. It makes you realize you are not alone.

At what point in your journey with MS did you become a fundraiser/advocate? What does that mean to you?

The year I was diagnosed I did do the MS walk in Cheshire, CT, with my mother in 2006. I wanted to do something for the cause. I solicited donations from co-workers and raised approximately $200.00. I did not start getting involved in fundraising until a friend of mine decided to get a dozen “gals together” and created a team around me called “Kim’s Cronies” to walk and raise money for multiple sclerosis – that was 2010. Our team grew to friends and family in 2011, and it was in 2012 when the captain of our team, Ellen Kearney, proposed the idea of a pasta dinner with raffles. Her amazing family was right behind her to support her idea and I went along for the ride as co-captain. When we began soliciting for raffle prizes from different business and acquaintances, we truly learned how generous people are in the community. So many people are willing to give and help out a worthy cause, it puts faith back in mankind. It allows me to realize I am helping others with multiple sclerosis, it’s not directly for me, and that’s an awesome feeling to give back to others. The other interesting part of this is that most people have some personal connection to this disease and want to help in finding a cure.

Can you tell us about your awesome team Kim’s Cronies? How did you get so many people together?

Kim’s Cronies started out with a small group of women wanting to do the MS Walk. It was a good cause, there was a personal connection and it was a beautiful day in May to walk in Forest Park. We basically did it for the camaraderie and support. As stated previously, more and more family and friends wanted to join our group and support the fight against multiple sclerosis. We have now grown into a group of 50 or more and are still growing. This group has joined in on the Kim’s Cronies Pasta Dinner with Raffles that attracts more then 300 people. This pasta dinner is a segue to invite anyone who is interested in raising money and wants to walk. We are all-inclusive, and we even have the elders join us the day of the walk for the picnic afterwards, even if they are unable to participate in the walk. It’s about showing support to make people aware of this MS and raising the money to fight this disease.

We’ve had the honor of sponsoring you and your team for multiple events. What keeps you coming back to PatientsLikeMeInMotion?

Kim’s Cronies deeply appreciates the generosity of PatientsLikeMeInMotion. We are so grateful that you are willing to support us in raising money for multiple sclerosis. We will continue to look to you for sponsorship. Kim’s Cronies wants to be associated with a great resource. I personally access PatientsLikeMe as a resource for any questions I have concerning this disease, medications, treatments…I remember messaging individuals on therapy changes and getting a message back concerning their experience with their treatment. I know of no other site that allows me this opportunity. It’s a great connection to have, and I let everyone know about the networking that is available to them through your website. It’s an honor to be associated with you.

What would you say to others in the community that might inspire them to get out there and raise awareness, too?

I truly believe I was given an awesome opportunity to be allowed to fundraise for a worthwhile cause as multiple sclerosis. This disease affects me personally, but I do not view this as I am doing this for me. I look at it as helping others. Helping others is a totally different outlook to have concerning a chronic disease. It’s a way of being of service to others and not just feeling sorry for myself because I have this disease. This gives one a sense of purpose in this world, volunteerism is so rewarding. I have plenty to keep me busy – I have all the responsibilities in life of your non-affiliated person, but I believe volunteering for any cause you believe in is a gift.

Kim’s Cronies will continue our fundraising as long as we possibly can. Every penny raised helps the fight.


The Patient Voice- Parkinson’s member Ed shares his story

Posted April 21st, 2014 by

 

Back in March, we shared some of our infographics and videos on the blog, and as part of our #dataforgood initiative, PatientsLikeMe member Ed spoke about his experiences with Parkinson’s disease and why he thinks it’s all a group effort. Click above to watch his video, and keep an eye out for more interviews with PatientsLikeMe members talking about what #dataforgood means to them.


Patients as Partners: The Perceived Medical Condition Self-Management Scale questionnaire results

Posted April 18th, 2014 by

Back at the beginning of April, we launched a new blog series called Patients as Partners that highlights the results and feedback PatientsLikeMe members give to questionnaires on our Open Research Exchange (ORE) platform. This time around, we’re sharing the results of the Perceived Medical Condition Self-Management Scale (PMCSMS), a health measure that looks at how confident people are in managing their own conditions. More than 1,500 members from 9 different condition communities on PatientsLikeMe took part. They worked with our research partner Ken Wallston from Vanderbilt University to make the tool the best it can be. (Thank you to everyone that participated! This is your data doing good.) Check out the PMCSMS results and keep your eyes peeled for more ORE questionnaire results as we continue the series on the blog.

What’s ORE all about again? PatientsLikeMe’s ORE platform gives patients the chance to not only check an answer box, but also share their feedback on each question in a researcher’s health measure. They can tell our research partners what makes sense, what doesn’t, and how relevant the overall tool is to their condition. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.


Food for thought: April edition

Posted April 15th, 2014 by

Everyone’s got a favorite dish (pizza is one of ours), and many PatientsLikeMe members share a bunch of their recipe ideas and foods in the forum. So, we’re going to start highlighting some of the hottest – or maybe the coolest, if you like gazpacho – conversations on the blog as part of a new “Food for thought” series. We’ll be featuring what people are saying in different condition communities.

So, what are people talking about this month?

Fibromyalgia forum thread: What did you make for dinner tonight?

“Leftover sage and rosemary soup, added mushrooms and scrambled egg batter. Stirred until cooked, added sea salt and pepper. Yummy!”

“Crock pot lamb shanks and salad.”

“A protein bar and yogurt – not hungry.”

Type 2 diabetes forum thread: High early morning blood glucose readings

Try having a low carb high protein snack at bedtime. This usually helps me have a lower reading in the morning. I have a really grainy piece of toast with peanut butter or cheese and it works wonders.”

“I eat my dinner at 4:30 or 5 p.m.  I also watch my carbs.  That helps me get the sugar down in the morning.

“At night for a snack and hour or so before bed I might have a piece of celery with peanut butter.

Multiple sclerosis forum thread: Different diets and reactions

“I have to say, the flavor of grass-fed beef is far superior to that of the ‘conventionally raised’ beef.”

“I have gone with the Mediterranean diet and it seems to have helped me physically. Not so much neurologically, though

Does any of that sound familiar? If you are living with fibromyalgia, diabetes type 2 or multiple sclerosis, join PatientsLikeMe and jump into a conversation in the forum, or start a new thread of your own. Sharing experiences has never tasted so good!


“I would just like to understand the ‘why’” – a conversation with PD community member dropsies

Posted April 14th, 2014 by

Right at the start of April, you might have seen us post on the blog that it’s Parkinson’s (PD) Awareness Month. And to keep Parkinson’s awareness going strong all month long, we’re sharing a recent interview with PatientsLikeMe member Betty – aka dropsies to those in the community. She was diagnosed with Parkinson’s back in 2009, but was experiencing symptoms since way back in 2005. And just at the start of 2014, she was also diagnosed with type 2 diabetes. Check out her interview below where she shares about her frustrating Parkinson’s diagnosis experience, how diabetes might impact her future eating habits and what she means by a family of ‘co-takers.’

Tell us about your initial diagnosis experience with Parkinson’s – on your PatientsLikeMe profile, you mention your symptoms aren’t “textbook” – what are they like?

My diagnostic tale has been long, complicated, and oftentimes frustrating, like many PWP experiences, and has yet to come to a medically-agreed upon final conclusion. I don’t care what it’s called. I would just like to understand “why” before I’m actually confined to life in a wheelchair.

After two years of thorough investigation, working with my PCP and including cardiac and rheumatology examinations, my neurologist eliminated many possibilities, with testing for lyme disease and lupus being repeated. The only confirmed diagnoses to be made were narcolepsy without cataplexy, a condition my history showed I’d had since childhood, but  escalated with menopause and restless leg syndrome (RLS).

Three years later, after aggressive treatment to control the narcolepsy and RLS, the unexplained issues continued to worsen. The increasing difficulties were with balance, loss of dexterity, freezing at step-ups, dystonia, shuffling gait, physical restlessness, exertion tremors with pronounced shortness of breath, full body muscle pain and stiffness, arms clinging to the body, and index or middle finger fidgeting the thumb, most presenting intermittently with no definitive pattern. I was referred to an MDS in May of 2009 who reviewed the battery of tests, labs, and imagery from the previous 5 years, conducted a clinical examination, waited 4 months and repeated the examination to conclude “an undefined movement disorder, prominent on the left, not rapidly progressing (therefore not of immediate concern) but probably early Parkinson’s Disease”. I was put back under the care of my primary neurologist with additional dosages of Mirapex, already being taken for RLS, and life continued on.

Within the year occasional episodes of Choreoathetosis greatly disturbed co-workers and friends, and as my lack of alertness became alarmingly severe despite an increase in Provigil, the Mirapex was reduced back to bedtime only. It was clear that treating my Parkinson’s symptoms was not going to be easy with narcolepsy. Under a new supervisor, my job duties were reviewed and adjustments made, but it was still a position that required a great deal of personal interaction, and eventually it was determined that I could no longer meet expectations. I was losing the ability to comprehend, think, and speak “in real time.” I moved back “home” and began the task of making a new and very different life.

My current PCP, who cautiously agrees it’s Parkinson’s, is very supportive and wants very much to improve my quality of life. I have been referred to two neurologists within the last 5 months, neither an MDS, but both, within the first 5 minutes of a single office visit and without my medical records, have dismissed the 2009 diagnosis with no further investigation planned, or even offered. One, who felt cog-wheel rigidity in my left wrist, said “it’s complicated,” but why no genetic testing, no PET or SPECT, and why wasn’t a trial of Sinemet given? The other said I don’t have resting tremor, he found no cog-wheel rigidity, and I show facial expression, so it can’t be Parkinson’s, so there’s no reason to try Sinemet.

It takes approximately 18 hours of continuous observation in a simulated home environment using standardized methodology to gather the data necessary to diagnose narcolepsy, so how can movement disorders, with such a wide array of possibilities and variations, be properly diagnosed in randomly performed clinical examinations generally lasting less than 45 minutes in total?

Your oldest son is now your caretaker, and you mentioned the difficulty of the role reversal, can you tell us about that?

It’s become more of a shared role between both my sons, although the youngest doesn’t live nearby.

It has taken time for all of us to adjust to the changes, and although it will be a continuing adjustment, what I thought I had lost as a mother is not lost after all. I came to realize that I still needed to hold on to being Momma. I had to see that I still have the opportunity to teach my children by example. And they had to realize they still needed me to lean on from time to time and to offer thoughts for their consideration when making decisions. Sure, some things have changed a little, but then the small stuff has always been a moving target.

Twenty-five years ago I’d stay in the car while my oldest went into the neighborhood store alone to make a purchase. Now I sit in the car while he goes into a store to make a purchase for me. So I sit in the car . . . nothing new, just different reasons. Fifteen years ago I’d tell my youngest it was a FYOS night because I had too much work to finish. Now I may tell him to help himself with whatever he can find, but I’m not feeling up to eating anything for a while. So he fixes his own supper . . . nothing new, just different reasons.

What I had to realize is that we are still what we’ve always been. We are family, co-caretakers of each other. We are learning to work together again, just as we did when they were still living at home. Only the reasons have changed.

You’re super active when it comes to filling out your health profile on PatientsLikeMe — how do the tools help you track your health, and what have you learned?

One thing that I have definitely learned is that once a symptom becomes a daily standard, I don’t necessarily notice or remember it unless it was severe or continuous that day. I may have a single incidence of freezing early in the day and if I don’t fall from it, or have a great deal of difficulty breaking loose from it, I completely forget about it by the time I do my symptom update.

I’m certainly learning there’s no predictability! I keep thinking that I’ll see some kind of pattern, but nothing has appeared as yet. I can have symptoms causing me great difficulty for weeks at a time and suddenly disappear for months before being noticed in the slightest again. And others are always with me, but other than the obvious, such as loss of coordination and falls, and stress effects, there’s no pattern or connection, even in the level of severity.

You’ve recently been diagnosed with type 2 diabetes. How has another diagnosis impacted your Parkinson’s and day-to-day life? 

So far it’s been a blessing. I put on a great deal of weight since I began this journey, and with little pleasures left to be enjoyed and apathy holding my focus to the simple pleasure of food, I needed a wake-up call! If I’m ever prescribed Sinemet or any Levodopa, I know I’ll have to reevaluate my eating plan to compensate for the protein conflict, but for now I’m trying to stay focused on controlling my diabetes and losing as much weight as I safely can.

It’s probably a first, but I was disappointed that I did not experience the most common side effect of my diabetic medication, Metformin. Both the doctor and the pharmacist gave stern warning that it causes severe diarrhea in the first few weeks. With the constant battle of constipation PWP endure, I was looking forward to it, but it never happened! No change in that situation at all.

Finally, April is Parkinson’s Awareness Month. You mentioned fitting into a world that ‘doesn’t know’ what it’s like. What would you like to teach people about Parkinson’s?

The most important thing from my perspective would be that Parkinson’s is not fully visible! Besides the mental and emotional changes caused by the altered state of brain neurotransmitters, there are other non-motor symptoms caused by Parkinson’s. Even tremors are not always “visible.”

One of my earliest and continuing issues is Akathisia, better known as internal tremor and restlessness. There are times that if what I feel could be seen, it would look as if I was holding a live electrical wire. I’ve day-dreamed of a torture rack and how wonderful it would feel to be stretched until it stopped. Thankfully, this level of severity is rare for me. It’s more subtle most of the time. It’s a feeling that doesn’t allow me to sit or stand still. Regardless of the fatigue and pain that builds, sitting to rest is worse. The only thing that brings any relief is to keep moving. If I stop in one place I rock. If I must sit I fidget until I can’t take it anymore and I get up and start pacing, stretching, moving! If it’s confined to just the arms, wrapping in a massaging chair pad can ease it in time, but usually it’s full body and the only solution is to keep moving until it settles, often taking hours!

Akathisia is a little-studied, sporadic symptom in about 26% of PWP, and is only one symptom of Parkinson’s that is visible, although it leads to very visible attempts to get relief. Some of the other non-motor function symptoms PWP often face are constipation, bladder incontinence, difficulty swallowing, gum and dental deterioration, excessive sweating, intolerance to heat and cold, daytime sleepiness, pain, vision issues, loss of taste and smell, memory loss, difficulty with word recall, and apathy. Parkinson’s Disease does not stop with making slow, stooped, stiff, shaky people…it’s so much more!

Betty Bland

a.k.a. “dropsies”


A new collaboration and the work ahead: An interview with PatientsLikeMe Co-founder and President Ben Heywood

Posted April 11th, 2014 by

Earlier this week, PatientsLikeMe announced a five-year collaboration with Genentech. Our goal? To bring your experience – the patient experience – to a company that wants to learn more from the people who are living with serious diseases, and to better integrate your insights into their decision-making as they develop new medicines. PatientsLikeMe Co-founder and President Ben Heywood talks more about the work ahead.

So, why Genentech? What do you hope to achieve through this partnership?

Genentech is a leading biotech company and an acknowledged leader in oncology (which is where our initial focus will be).

We spoke with their teams for quite some time before embarking on this collaboration and I have to say that we just really like their approach. We’re very much aligned in our goals of defining a more patient-centric approach to research, development, and care delivery.

Their goal in working with us is to explore the use of our PatientsLikeMe network to develop innovative ways of researching peoples’ real-world experience with disease and treatment. I think we also hope and expect this collaboration will encourage broader engagement of others involved in the delivery of healthcare to support a stronger voice for patients like you.

How does this differ from your other collaborations?

What’s different with Genentech is that we’ll be exploring on a broader scale how the use of our patient network might develop new ways to research the patient experience. The broader access should allow for more agile, real-time use of the data and help align the strengths of the platform with Genentech’s priorities. This collaboration also helps PatientsLikeMe expand our cancer community, and we’re excited to be partnering with such a leader in oncology research and development on that.

How does this move “put patients first?”

Genentech is a forward-thinking company that is continuously working to patients at the center of their decision-making. By providing Genentech access to the health data shared by the members of our network, it will help them learn more from patients like you and better integrate your insights into their decision-making as they develop new medicines.

Is the focus on cancer new for PatientsLikeMe?

We have a community of people with cancer that have been using the site since we opened it up to people with any condition in 2011; many right now list cancer as a secondary condition, although some list it as their primary. Part of this collaboration is about using resources to enhance the tools within our network to help make the site even more useful for cancer patients. Of course what we build for one community will benefit all, much like we’ve done all along. The end result is a website that better serves people’s needs.


Promoting better digestive health in April

Posted April 10th, 2014 by

The digestive system contains a bunch of organs (8 to be exact), everything from your stomach to your gallbladder. It’s important to be aware of what can affect all these parts, and this is why back in 1997, the International Foundation for Functional Gastrointestinal Disorders (IFFGD) designated April as Irritable Bowel Syndrome (IBS) Awareness Month.

IBS affects the entire digestive system, and there is currently no known cause for the condition. What’s more, many people have experienced IBS, but they dismiss symptoms as routine. Common signs include chronic abdominal pain, constipation and bloating, and sometimes these will be relieved by bowel movements.

IBS is more common than you might think – different estimates report that between 10 and 15 percent of the entire global population is affected with some form of IBS1 2 – so if you’re living with IBS, you’re definitely not alone.

There are plenty of ways to raise awareness for IBS during April, and here are just a few ideas to get started:

If you’ve been diagnosed, visit the IBS community at PatientsLikeMe, where over 3,600 members are sharing their experiences in the digestive and intestinal forum.  See how your day-to-day life with IBS compares to others, ask questions and get answers from people who know what you’re going through.


1 Grundmann O, Yoon SL. Irritable bowel syndrome: epidemiology, diagnosis, and treatment: an update for health-care practitioners. Journal of Gastroenterology and Hepatology. 2010;25:691–699.

2 Understanding irritable bowel syndrome. American College of Gastroenterology website. www.patients.gi.org/gi-health-and-disease/understanding-irritable-bowel-syndrome . Accessed August 15, 2013.


PatientsLikeMeInMotion 2014: Celebrating 6 years of PatientsLikeMe members giving back to their communities and raising awareness

Posted April 8th, 2014 by

It seems like it was just yesterday when PatientsLikeMeInMotion was launched, but it’s been going strong for more than 5 years now – wow, how time flies!

We’re celebrating the 6th year of PatientsLikeMeInMotion with a recap of 2013, the biggest year so far! We had the honor of supporting 1,611 members across 27 states who participated in everything from a JingleBell race and the MS Muckfest to a golf tournament and a motorcycle ride. These people raised money for their favorite nonprofits and rallied everyone to promote awareness for their health conditions.

If you’re unfamiliar with how it works, check out our guidelines – we sponsor 3-star members (super health data donors) who form teams and fundraise with their local nonprofits. And these advocates receive a donation, free team t-shirts and more! Here’s what a few members had to say:

I feel so fortunate every time my family and I can contribute, with [PatientsLikeMe’s] help, to the financing of research for the cure.

We love participating in the PatientsLikeMeInMotion program. It’s a wonderful opportunity for our cause to not only earn money, but we love having our volunteers sport the blue PatientsLikeMe shirts at our events! It’s a win-win for us!

 

Quick facts:

More than 1,600 members from 83 different teams raised close to $18,000 through the PatientsLikeMeInMotion program in 2013.

Events took place in 27 states.

Patients represented 16 disease communities.

Thanks to everyone who participated in 2013! If you’d like to join the program in 2014, here’s all you need to do:

    1. Join PatientsLikeMe (it’s free!)
    2. Get 3 stars (your profile is up-to-date)
    3. Submit your team details (within 3-4 weeks notice of the event, please!)

But wait, there’s more! We’re following up with multiple sclerosis (MS) community member “2006,” who put together a huge team to raise awareness for MS. She’ll be sharing her experiences in an upcoming interview, so keep an eye on the blog in the next few weeks.


Genentech and PatientsLikeMe enter patient-centric research collaboration

Posted April 7th, 2014 by

Companies Sign Multi-Year Services and Data Subscription Agreement
With Initial Focus on Oncology

CAMBRIDGE, Mass. — April 7, 2014 — PatientsLikeMe announced today a five-year agreement with Genentech, a member of the Roche Group (SIX: RO, ROG; OTCQX: RHHBY), to explore use of PatientsLikeMe’s global online patient network to develop innovative ways of researching patients’ real-world experience with disease and treatment. The agreement is the first broad research collaboration between PatientsLikeMe and a pharmaceutical company and provides PatientsLikeMe the opportunity to expand its patient network in oncology.

“We envision a world where patient experience drives the way diseases are measured and medical advances are made. Genentech’s leadership and commitment to this mission brings us closer to having patients at the true center of healthcare,” said PatientsLikeMe Co-founder and Chairman Jamie Heywood. “With Genentech we can now embark on a journey to bring together many stakeholders across healthcare and collaborate with patients in a new way.”

“At Genentech, we come to work every day with the goal of transforming patients’ lives. The collaboration with PatientsLikeMe will allow us to learn more from patients with serious diseases, and better integrate their insights into our decision-making,” said Bruce Cooper, M.D. senior vice president, Medical Affairs, Genentech. “We hope our participation will encourage broader engagement of others involved in the delivery of healthcare and support a stronger voice for patients.”

The five-year agreement provides Genentech the opportunity to utilize PatientsLikeMe’s Global Network Access, a new service for pharmaceutical companies that delivers a range of data, research and tools. The service includes:

  • Access to PatientsLikeMe’s network to enable cross-sectional research and broader discovery of patient insights.
  • Enhanced customized research services and capabilities.
  • Focused research projects to evaluate and develop new medical evidence, measures and standards of health.
  • Access to PatientsLikeMe’s clinical trial awareness tool, which allows patients to learn about clinical trials.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 250,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 40 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

About Genentech
Founded more than 35 years ago, Genentech is a leading biotechnology company that discovers, develops, manufactures and commercializes medicines to treat patients with serious or life-threatening medical conditions. The company, a member of the Roche Group, has headquarters in South San Francisco, California. For additional information about the company, please visit http://www.gene.com.


Patients as Partners: The WHYSTOP Scale questionnaire results

Posted April 4th, 2014 by

We’re really excited to launch a new series here on the blog called Patients as Partners. The series will highlight the results and feedback that PatientsLikeMe members give on questionnaires from our Open Research Exchange (ORE) platform.

What’s ORE all about again? PatientsLikeMe’s ORE platform gives patients the chance to not only check an answer box, but also share their feedback on each question in a researcher’s health measure. They can tell our research partners what makes sense, what doesn’t, and how relevant the overall tool is to their condition. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.

So to kick the series off, we have results from the WHYSTOP Scale, which measures how diabetes can impact appetite and how people decide when they’re done with a meal. Back in September, we launched this as one of the first-ever questionnaires on ORE with our research partner William Polonsky, Ph.D., CDE, from the Behavioral Diabetes Institute and University of California, San Diego. More than 700 type 2 diabetes community members added their voices, and all of the answers and feedback shaped and influenced the health measure to make it the best possible. (Shout out and thank you to all those that participated!) Check out the WHYSTOP survey results and keep an eye out for more ORE questionnaire results coming up as we continue our Patients as Partners series.

 

 

 


Making a difference for Parkinson’s disease in April

Posted April 2nd, 2014 by

 

After getting diagnosed with Parkinson’s disease (PD), PatientsLikeMe member Ed recalled “I needed to talk to people who had the disease, because only they knew what it was like…and could help me get through that initial shock… we can do much better fighting the disease as a group than we can as individuals.” And that’s why all throughout April, everyone impacted by PD is coming together to get the word out for Parkinson’s Awareness Month.

PD is a chronic and progressive movement disorder that affects around 1 million people in the United States, and symptoms of the condition include tremors, stiffness and impaired balance. There is no known cure for PD, but medication and surgical options can sometimes relieve a few symptoms.1

To get PD Awareness Month started, check out one of the many events being organized in April by the Parkinson’s Disease Foundation (PDF) and the National Parkinson Foundation (NPF). You can join the NPF’s Team Hope, get involved in the PDF’s Parkinson’s Advocates in Research (PAIR) program and find local Parkinson’s resources and organizations.

If you or someone you know has been recently diagnosed with PD, head over to the PD community at PatientsLikeMe, where over 8,000 members are tracking their symptoms and sharing their experiences.

Spoiler alert! That isn’t all Ed had to say about his own experiences and what sharing on PatientsLikeMe means to him. Keep an eye on the blog later this month; we’ll be posting his recent video interview.


1 http://www.pdf.org/en/about_pd