8 posts from August, 2013

The Open Research Exchange- A talk with Paul Tarini and Ben Heywood

Posted August 30th, 2013 by

Founded on a philosophy of “openness,” PatientsLikeMe aggregates patient-reported data from over 200,000 members on 2,000 diseases, analyzes them and shares the results with healthcare and life science companies to accelerate research and develop more effective treatments.

With support from the Robert Wood Johnson Foundation, we’re now building the Open Research Exchange (ORE) so that researchers, clinicians, academics and patients can collaborate to put patients at the center of the clinical research process. ORE will be the hub where we can work together to develop new health outcome measures and increase our collective understanding of disease – faster than ever before.

Hear RWJF Senior Program Officer Paul Tarini and PatientsLikeMe Co-Founder and President Ben Heywood talk about ORE.



Quick poll- taking control of your health

Posted August 26th, 2013 by

We’re curious about something: how are you taking charge of your health, and how is that changing conversations with your doctors? So, we thought we’d ask in a Quick Poll!

Do you feel more in charge of your health today compared to one year ago?

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What tools do you find the most helpful to manage your health? (check all that apply)

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Are you starting conversations about your health with your doctor more than you have in the past?

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PatientsLikeMe creates largest open registry of IPF patients in the world

Posted August 22nd, 2013 by

Community One of Website’s Fastest Growing;
Reveals Real-World Picture Of Daily Life With the Rare Lung Disease

CAMBRIDGE, Mass.— August 22, 2013—
In a few short months, PatientsLikeMe has created the largest open registry of idiopathic pulmonary fibrosis (IPF) patients online, and some of the most current patient-reported data on the disease. The information the community has shared is providing new clues about the condition and giving a rare look into what it is like to live daily with a disease that has no known cause or cure.

According to the National Institutes of Health, pulmonary fibrosis causes scarring in deep lung tissue over time, making it harder for the lungs to move oxygen into the bloodstream. Cases where the cause of the disease is unknown are called IPF and usually affect middle-aged and older adults, more typically men, and an estimated 100,000 people in the United States.

The company’s focus on IPF accelerated earlier this year when it announced a collaboration with Boehringer Ingelheim to enhance its IPF patient community. Now more than 900 IPF patients use PatientsLikeMe to monitor their health and share information about their experiences with the condition. They can also connect with others like them and find IPF research studies in their area. In the process, members are contributing new, comprehensive data about the disease that will aid clinical research and the development of new treatments.

“We have become a magnet for people who want to learn about living with disease, and a central repository of real-world information on 2,000 common and rare conditions,” said Co-founder and President Ben Heywood. “It’s gratifying to see people gathering faster than ever before to support each other, live better, and contribute vital data to medical research.”

As the IPF community grows, PatientsLikeMe plans to study the challenges in diagnosing the disease and to ask patients about other top priorities for research. IPF patients interested in participating in research to improve understanding of IPF can sign up at http://www.patientslikeme.com/join/ipf/whatisipf.

The data shared on the website to date offer a snapshot of the IPF community’s members and highlight the effect the disease has on their lives:

  • The average age is 64; four out of five are older than 55.
  • 54% are male, 46% are female.
  • Approximately 15% report having familial IPF, a subtype of IPF thought to be genetically related.
  • An initial review of comorbidities shows that pulmonary hypertension, a condition that puts additional stress on the cardiovascular system, is most frequently cited. Other common co-morbidities include type-2 diabetes, gastro-esophageal reflux disease and osteoporosis.
  • Most report limitations to their activity and energy level. Over 90% experience shortness of breath during activities, while over 50% experience shortness of breath by just walking up a few stairs. About 7% are short of breath even when they are sitting down or at rest.
  • Close to 90% have noticed their energy level affected by IPF. About 35% say they often have to nap during the day or are always tired, no matter how much they sleep.
  • About 80% report having a cough. The majority report having a mild or moderate cough, but approximately 15% have severe coughing.
  • Approximately 11% have had unplanned hospitalizations as a result of their IPF in the past three months.

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. PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 35 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

“My new normal.” PatientsLikeMe member Jeff tells his personal journey with interstitial lung disease

Posted August 19th, 2013 by

Have you met PatientsLikeMe member Jeff, also known as NinerFan? He has been living with interstitial lung disease (ILD) since 2004 and he recently took some time to share his journey with us. He spoke about everything from getting diagnosed to being a newlywed, and gave a great list of advice for others going through a similar health experience.


In Dec 2004 we decided to move to another apartment and I was becoming so short of breath I couldn’t take it. I was 37 and had gotten into the best shape of my life that year, so I knew that there was something wrong. I was getting night sweats and coughing, so I figured maybe bronchitis or something. My primary care physician (PCP) sent me for X-rays and they came back abnormal, not really viable because I could not take deep enough breaths, so I went for a CT scan. That’s when I first heard the term ILD and I was scheduled to see a pulmonologist.

I did some web searching and got really worried. A week later the pulmonologist was arranging a biopsy. I didn’t understand why, but we did it. I had my case sent to a specialist at UCSF, and they started me on treatment nine weeks after I first noticed symptoms. I was in terrible shape. The recovery from surgical biopsy was rough and my breathing was still very labored. But, a couple weeks later the prednisone kicked in and I was feeling better. I wasn’t back to original shape, but I was able to walk around a bit without panting.

My new normal is what I call it. I could walk about 100 feet before I needed to stop and catch my breath, but forget about stairs or running ever again. I would need supplemental oxygen when walking any distances and for sleeping. My new normal left me at about 40% lung function, but it’s enough to keep my saturation just above 90% on most days if I’m sitting. So at least I can work a desk job. This new normal has lasted about 8 years so far, and seems to be stable since about 4 months after treatment.


Being a 37 year old newlywed man and developing this was a tragedy of epic proportion. I have learned to deal with it, but have gone through times of deep depression. I cannot sugar coat this because my symptoms and condition have completely altered my life. I never can let go of what should have been or should be. But, knowing others that are much worse has opened my eyes to the quality of life I still have. I still get to work and provide for my wife and haven’t missed more than a few days here and there dealing with this condition. And I know that there are opportunities for medical advances as long as I’m hanging in there. Also, should things worsen, I’ve known many that have lived richer lives over ten years after transplant and the advancements in that procedure are outstanding.

Hear are some warnings that I have learned the hard way and from others in the community.

  • You are your best advocate, so be sure to stay on top of your appointments and get second opinions from specialist.
  • Be careful to monitor yourself for side effects and secondary conditions because there are many.
  • Be sure to create a support system with family and even online with others in your condition.
  • If you need supplemental oxygen, then use it. You can develop other conditions if not.
  • When you’re researching online, don’t believe everything, especially in regard to life expectancy because most data is old and there are so many forms of ILD and progression.
  • You will need CT exams regularly to check your progression or stability.
  • If you got this from some kind of environmental or other trigger, you need to stop exposure to it forever.

I hope that anyone who lives with ILD gets the kind of support from loved ones and online friends as I have. I know many will not be able to control the progression of fibrosis from the inflammation in their lungs or end up like me, basically at snail speed, and I wish them all the best in life.

PatientsLikeMe selects first pilot users for Open Research Exchange™

Posted August 13th, 2013 by

Researchers and Patients to Test New Measures for Hypertension, Treatment Burden, Appetite and Diabetes, Primary Palliative Care

CAMBRIDGE, Mass.— August 13, 2013—PatientsLikeMe has named the first four researchers and teams who will pilot test its new Open Research Exchange™ (ORE) platform. Supported by a $1.9 million grant from the Robert Wood Johnson Foundation, ORE was created to help researchers design, test and openly share new ways to measure diseases and health issues. ORE involves patients at each step of the measure development process, enabling PatientsLikeMe’s 200,000+ members to guide and contribute to research so that it better reflects their needs.

The four researchers, whose work will be shared in an open library of patient-reported instruments and health measurements, are:

  • Gerald Arnold, Ph.D., M.P.H. and Rebecca Baranowski, M.Ed., M.S. of American Board of Internal Medicine (ABIM). The ABIM will create a primary palliative care questionnaire to help physicians assess how they work with seriously ill patients and their families/caregivers to manage symptoms and plan their care throughout their illnesses, well before they are at the end of life.
  • Tamara Kear, Ph.D., R.N., C.N.S., C.N.N. of Villanova University and Fresenius Medical Care. Kear will create an instrument for patients with high blood pressure to capture how they are doing between visits with their practitioner. It will also identify barriers in hypertension management, one of the factors prompting a rise in kidney disease.
  • William Polonsky, Ph.D., C.D.E. of the Behavioral Diabetes Institute. Polonsky is interested in developing a measure for diabetes patients that shows the impact of certain diabetes medications on satiety, or the feeling of being full.
  • Dr. Phillippe Ravaud, M.D., M.Sc., Ph.D. and Dr. Thi Tranviet, M.D. and Ph.D. candidate of the METHODS Research Team in Paris. They will validate a French-based questionnaire among English-speaking patients with multiple chronic conditions. The questionnaire measures the level of burden imposed by prescribed treatments so that providers know when their treatment regimes are too much for patients to handle.

Podcasts from and full details on the researchers are available at http://www.openresearchexchange.com.

PatientsLikeMe Research and Development Director Paul Wicks, Ph.D. said a wide range of researchers applied to the program after the company issued a call for participation during the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) conference in May. “We were astounded at the depth and breadth of measures that people want to create. We’re more confident than ever that our open approach and environment, and its link to a large and very active patient network, makes ORE the best platform for creating completely new ways to measure health.“

RWJF Senior Program Officer Paul Tarini said ORE’s focus on improved measurement will lead to improved care. “ORE has the potential to not only break new ground in the way research is conducted, but to help patients capture and report on outcomes that are much more meaningful to them.”

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. PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 35 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

About Robert Wood Johnson Foundation
The Robert Wood Johnson Foundation focuses on the pressing health and health care issues facing our country. As the nation’s largest philanthropy devoted exclusively to health and health care, the Foundation works with a diverse group of organizations and individuals to identify solutions and achieve comprehensive, measurable, and timely change. For 40 years the Foundation has brought experience, commitment, and a rigorous, balanced approach to the problems that affect the health and health care of those it serves. When it comes to helping Americans lead healthier lives and get the care they need, the Foundation expects to make a difference in your lifetime. For more information, visit www.rwjf.org. Follow the Foundation on Twitter www.rwjf.org/twitter or Facebook www.rwjf.org/facebook.

Raising awareness for psoriasis, all year long.

Posted August 9th, 2013 by

As many of you out there know, August is National Psoriasis Awareness Month, but it’s not the only time of year that you’re helping shine a spotlight on this chronic, autoimmune disease. This year, we wanted to take a look back at all the ways your community, both inside and out of PatientsLikeMe, has helped raise awareness for psoriasis.

The patient perspective
Eight different patients have shared their experiences with psoriasis on our blog. They’ve opened up about bullying in school, treatments that work for them and how connecting with others who understand what they’re going through impacts their life. Here are three of the most recent psoriasis patient interviews you can check out on our blog.

Maria– The real me
David– I still haven’t given up hope
Erica– Finding peace and confidence


What the docs have to say
We’ve also been interviewing dermatologists to get their perspective on psoriasis. They’ve spoken with us about everything from what they wished more psoriasis patients knew to how data sharing can change healthcare for good. Here are a couple interviews in case you missed them.

Dr. Jerry Bagel– Taking psoriasis treatment to the next level
Dr. Steve Feldman– Psoriasis, adherence and more


Contributing to research to advance healthcare
The PatientsLikeMe psoriasis community has also been raising awareness while actively adding their voices to real-time research. We just posted what we discovered in our fourth Uncovering Psoriasis seasonal survey. You can check out all the results from this and previous surveys too.

Spring 2013 survey results
Winter 2012 survey results
Fall 2012 survey results
Summer 2012 survey results


If you’re living with psoriasis, find others just like you in our growing community of more than 4,000 psoriasis patients on PatientsLikeMe. Learn what they’re doing to manage their condition with symptom and treatment reports, and share your own experience with a personal health profile or in the community forum.


Diabetes and stress- What the PatientsLikeMe diabetes community has to say

Posted August 6th, 2013 by

Here at PatientsLikeMe, we believe that sharing healthcare experiences is good. Why? Because when patients share real-world data, collaboration on a global scale becomes possible. So, we wanted to share back with everyone some results from a recent diabetes survey that nearly 600 PatientsLikeMe community members took part in. Our members entered their responses to the 17-item Diabetes Distress Scale (DDS), which measures the amount and types of problems diabetes can cause in a person’s life.

Have you had an A1C test done in the past year? 
Screen Shot 2013-08-06 at 10.00.59 AM

Download the PDF  to check out the results summary.

Dr. William Polonsky, Founder and President of the Behavioral Diabetes Institute, and the co-creator of the Diabetes Distress Scale, shared his thoughts about diabetes and stress with the PatientsLikeMe community.

“I believe it’s important to understand the physical, behavioral and emotional sides of illness. Diabetes, in particular, is so highly dependent on what people do every day.  It is, therefore, almost all about behavior− how do you talk yourself into taking on new tasks and making changes in your lifestyle, some of them which may seem not so pleasant or worthwhile, that you’d rather not do.”

Screen Shot 2013-08-05 at 9.26.49 AM

If you’re living with type 1 diabetes, or type 2 diabetes, find others just like you in our growing communities on PatientsLikeMe. Learn what others are doing to manage their condition with symptom and treatment reports, and share your own experience with a personal health profile or in the community forums.

PatientsLikeMe co-founder Jamie Heywood named to PharmaVoice Top 100

Posted August 5th, 2013 by

An MIT-trained mechanical engineer, Jamie entered the field of translational medicine when his 29 year old brother Stephen was diagnosed with ALS, or Lou Gehrig’s Disease. Today Jamie is a chief scientist and architect for PatientsLikeMe. Described by CNNMoney as one of the 15 companies that will change the world, Jamie co-founded PatientsLikeMe to ensure patient outcomes become the primary driver of the medical care and discovery process. Jamie is also the founder and past CEO of the ALS Therapy Development Institute (ALS TDI), the world’s first non-profit biotechnology company.


And just a few days ago, Jamie was named to the 2013 list of the 100 most inspiring people in the life-sciences industry by PharmaVoice. Here at PatientsLikeMe, our members inspire us every day. Check out the complete article in PharmaVoice, page 77.