13 posts from February, 2013

Raise Your Hands for Rare Disease Day

Posted February 28th, 2013 by

Today, February 28th, is Rare Disease Day, a worldwide event showing solidarity with rare disease patients and their families around the globe.  The theme for this year is “Raise and Join Your Hands,” and everyone is being asked to participate, whether you’re an individual, an office with 10 people or a public gathering with 1,000 people.

Here at PatientsLikeMe, we are taking part by raising our hands and sharing our group photo in solidarity with the campaign as well as all of our members living with rare diseases, which affect 1 in 10 people worldwide.  You are encouraged to submit your own photo here.

PatientsLikeMe Employees Raising Their Hands for Rare Disease Day 2013

Rare diseases are a special passion for PatientsLikeMe, as our company was started due to our founders’ experience with a rare disease called ALS (Lou Gehrig’s disease).  Since then, we’ve partnered with the Global Genes Project to form the RARE Open Registry Project to connect patients fighting rare diseases and help them share and learn.

“It’s terrifying to think you’re alone and manage your rare illness with a doctor who might not have ever seen another patient like you,” says PatientsLikeMe Co-Founder Jamie Heywood. “We will change that.”  Most recently, we launched the world’s first open registry for patients with alkaptonuria (AKU), the first genetic disease discovered.


Posted February 28th, 2013 by

CAMBRIDGE, Mass. — February 28, 2013—On Rare Disease Day®, PatientsLikeMe announces a new collaboration with Boehringer Ingelheim to enhance its online patient community for people with idiopathic pulmonary fibrosis (IPF), a rare lung condition with no known cause, treatment or cure. Through a customized experience on PatientsLikeMe, IPF patients can now monitor their health and progress over time and connect with others to learn more about the condition.

“We are excited to partner with Boehringer Ingelheim, a leading pharmaceutical company, to support this patient initiative,” says PatientsLikeMe Co-founder and President Ben Heywood. “Rare diseases are sometimes called ‘orphan diseases’ because they affect so few people, and don’t attract significant research attention or funding. Our website is where patients count. They’re contributing their real-world experience to help others living with IPF and advance research.”

According to the National Institutes of Health, pulmonary fibrosis is a disease in which deep lung tissue becomes scarred 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, in all an estimated 100,000 people in the United States.

“I’d been short of breath for sometime but put it down to an unhealthy lifestyle. My doctor explained the X- ray had shown I had ‘stiff’ lungs and that I should see a specialist,” says 61-year old Ian Bannister, who was diagnosed with IPF in March 2010 and received a lung transplant a year later. He adds, “When you get a diagnosis like IPF, the first thing you do is look on the Internet for information. I wanted to hear directly from people who were either living with it or who had managed to get transplants. PatientsLikeMe is a great idea and gives you direct access to people who are, or have been, in the same situation as you.”
People who have any form of pulmonary fibrosis, including IPF, can join PatientsLikeMe for free at http://www.patientslikeme.com/join/ipf.

About PatientsLikeMe
PatientsLikeMe 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 30 peer-reviewed research studies . Visit us at www.patientslikeme.com or follow us via our blog , Twitter or Facebook .

Creating an Open-Access Platform for Patients: An Interview with Jamie Heywood and Paul Tarini

Posted February 25th, 2013 by

RWJF has awarded PatientsLikeMe a $1.9 million grant to create the world’s first open-participation research platform to develop patient-centered health outcomes. The new platform will be linked with the PatientsLikeMe network to help researchers develop health outcome measures that better reflect patients’ experiences with a disease, and assess health and quality of life in ways that matter to patients.

Jamie Heywood, co-founder of PatientsLikeMe, and Paul Tarini, senior program officer of the Pioneer Team at RWJF, share their views on why creating an open-access platform to develop measures that matter to patients could advance meaningful treatments that improve health and advance research.

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Why is this a pioneering project?  What makes it novel?

PT: We see this as an opportunity to help improve the use of real-world data. As we look at the potential power of this data, we are concerned about how hard it is to move it out of the real world and into more formal settings where it can be applied.  Traditionally, data drawn from the day-to-day experiences of people living with disease have been viewed with real suspicion by those working in more formal settings, such as medical practice and research. So the possibility of developing a way to structure data from the real world and validate it solved a number of those problems. Also, the fact that PatientsLikeMe was willing to largely open-source the creation and availability of the outcome measures that would get produced was a very important public good the Foundation wanted to pursue.

JH: We have been thinking for a long time about how we can really shift the way health care operates into a new paradigm – a “learning health system model” that continuously measures and improves. PatientsLikeMe is helping to build this model by developing a set of integrated measures that characterize the real world state of each patient. What is novel about patient-reported outcomes is we are harnessing the best ideas for measuring each condition through a crowd-sourcing, open-source approach. This will dramatically accelerate our understanding of human health. If we can create a shared partnership with patients and researchers, it will break down a lot of silos, barriers and cost inefficiencies so we can improve and increasingly use outcome measures as a de-facto practice.  Physicist Lord William Kelvin famously said “to measure is to know.” Today we use outcome measures to understand what we practice, not to determine what we should practice. That is backwards. We want to reverse the system so that the outcome becomes the measure of medicine. If we can develop a measurement system that is openly shared and centered on the patient, we will move our knowledge forward and bring medicine to a new and important level.

How will patient-reported outcomes fill the vacuum of “measurement in medicine”?

PT: This is a critical point. We need health outcome measures that hold meaning for patients in contrast to those that are developed by providers or researchers to help them do their jobs. We have seen time and time again that there is not a perfect overlap between the interest of providers, patients, or researchers.  If patients start driving and defining what outcomes are most important to pursue, then we believe we will see some real potential for changes in clinical protocols and research agendas, which could lead to dramatic improvement in health outcomes.

JH:  Like all complex problems, there’s no simple answer to this question. Many measurements are copyrighted, expensive and unavailable for clinical use, or they’re not designed to be meaningful and useful for patients. You can find some instances where measures are used effectively overall but in general they are not part of healthcare. The ability for crowd sourcing to iterate toward measuring what is meaningful and to empower patients with those tools dramatically increases the odds that these measures will be relevant and efficient, and that they’ll be used.

What is exciting and transformative about a project that leverages data in real-world, real-time?

PT: Anybody who is living with a disease spends most of their time living with it in the real world.  They only spend a very small amount of time in a provider setting, yet most of the information we collect traditionally on the status of disease is always collected in those provider settings.  That is such a limited view of what someone is experiencing and how it is affecting their lives. So to be able to get a fuller, richer picture of somebody’s total experience with their particular disease – not just the limited window when they are in a provider’s office – is where new understanding and new knowledge and treatment priorities can emerge.

JH:  My brother Stephen died of ALS (Lou Gehrig’s Disease) when he was 36. When I look back and wonder what might have changed that, and when I think about the tens of thousands of patients who have gone though ALS and tried so many different things to improve their lives, I think of all the knowledge that was lost because the system did not measure or learn. I feel a very keen sense that we continue to throw away information and insights that might lead to new knowledge, and certainly better care.  That experience has made me determined to work toward a world where the next patient who is diagnosed with a disease can make informed choices based on the actual, quantified experience of every patient who has gone before them, and with the best insights of every clinician. Imagine trying to manage your credit cards and bank statements without knowing your balance, or by having to guess the value of each transaction. You would have no idea how to manage your finances. Yet, that’s how we run health care, because we have few meaningful outcomes.

Should patients be excited about this?

PT:  If this is done right–and the measures that get developed are measures that are meaningful to patients–this will give them a way to collect and report on their own experience, which is an important first step. As people begin to do that, patients will begin to see it will change the dynamic they have with their providers. It changes the power of their information and puts them on more equal footing. I also believe there is an altruistic streak that runs through all of us. The opportunity to contribute your information to a larger knowledge enterprise to make it better for others is a pretty powerful motivator for a lot of people.

JH:   We are combining several levels of crowd learning into one integrated system. The PatientsLikeMe system allows for individuals to contribute structured, quantitative knowledge into one model. But what is being added are two powerful new tools.  The first is the ability for patients and researchers to collaborate in the authoring and evolution of the tools.  The second is a real-time feedback mechanism that reviews each instrument for its utility, relevance to the patient, and context. Having a feedback loop so patients can comment and impact the design, coupled with the ability to immediately and rapidly generate significant amounts of quantitative data, is revolutionary. The validity of outcome measures is ultimately driven by their utility to patients, which is a very different concept from the way things work now. This is a disruptive shift.

Why is it important for a foundation to engage in these kinds of relationships at this time?

PT:  The fact that PatientsLikeMe is a for-profit didn’t figure into our analysis on the project’s worth.  The Foundation made its decision based on the merits of what they were proposing and the potential it afforded. For us, the issue is not ‘oh let’s go fund a for-profit’; rather, the issue is whether this is an idea worth funding.

JH: Health care, whether for-profit or nonprofit, is full of silos that prevent the flow of data and information largely to defend existing profit centers. This harms the system and the patient. There are a lot of technologies being developed now that will likely disrupt these silos. The Robert Wood Johnson Foundation deserves a lot of credit for engaging in a dialogue with us and many others to disrupt traditional ways of doing things in health care.  They are looking at these developments in a very strategic and important way to make sure the system is inherently open. What distinguishes PatientsLikeMe is that it is fundamentally voluntary. If we are to succeed, we have to deliver on our commitment to patients to advance understanding of their disease and contribute to the research process. Information networking in health care today is like the beginning of the Internet. It is a great public good that RWJF is thoughtfully working to ensure that this fast-developing network is structured in ways that improve the human condition.


Posted February 25th, 2013 by

Real-time health learning system will generate health outcome measures that are meaningful to patients and align medical research with patient needs

February 25, 2013—Long Beach, CA—PatientsLikeMe has been awarded a $1.9 million grant from the Robert Wood Johnson Foundation (RWJF) to create the world’s first open-participation research platform for the development of patient-centered health outcome measures. The platform is part of a new open-science initiative that puts patients at the center of clinical research process and will allow researchers to pilot, deploy, share, and validate new ways to measure diseases. An “idea worth spreading,” the initiative will be spotlighted today in a presentation at TED2013 by Paul Wicks, Ph.D., PatientsLikeMe’s Research Director and a new TED Fellow.

Health outcome measures are typically developed by clinicians and researchers, and collect information that meet their needs. Linked with the PatientsLikeMe patient network, the new platform will help researchers develop health outcome measures that better reflect patients’ experiences with a disease, and assess health and quality of life in ways that matter to patients.

“This project is really exciting for us because it focuses on data that is developed by patients in the real world, where they spend most of their time, as opposed to controlled clinical settings,” says Brian Quinn, team director of RWJF’s Pioneer Portfolio, the team funding this project. “We believe it has the potential to help researchers better understand the course of disease and open up important paths for the development of new therapies. We’re eager to see what medical revelations will emerge when researchers focus first on patients’ needs and concerns, and openly collaborate with patients and each other.”

PatientsLikeMe is an established network for patients who want to monitor their health, improve their outcomes, and contribute to medical research and discovery. Nearly 200,000 patients, representing more than 1,500 diseases, have created longitudinal records centered around their health outcomes.

Using the platform, researchers will quickly attract PatientsLikeMe members to their studies, track the progress of newly developed measurements, and export data for analysis. Patients will be able to offer their rapid feedback to ensure that measures are relevant to their experience of disease.

In this open-participation research initiative, access to the new platform will be free, and all instruments and items developed on the platform will be made openly available for free, unlimited use and further development with no commercial restrictions. PatientsLikeMe is also contributing the dozens of existing instruments they have developed. Charitable users will receive discounted access to data compiled by PatientsLikeMe for the initiative.

“Measurement is the basis of knowledge. For too long, there have been restrictions placed by copyright and weak and out-of-date tools to measure a patient’s experience with disease,” says Jamie Heywood, co-founder and chairman of PatientsLikeMe. “Patients, researchers, and clinicians working together to iterate and learn about the holistic journey of each condition and health itself is a critical step toward transforming care and discovery so that they truly serve the patient.”

A beta version of the platform will be unveiled in the coming months.

For more information about the initiative, visit: http://rwjf.org/en/grants/grantees/PatientsLikeMe.html

Professional organizations, patient-reported outcome specialists, funders, academic researchers, and others interested in participating in the initiative are welcome to email openscience@patientslikeme.com.

To join PatientsLikeMe, visit: http://plmjoin.com/openscience.

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.

About PatientsLikeMe

PatientsLikeMe 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 has become a trusted source for real-world disease information and a clinically robust resource that has published more than 25 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Psoriasis and Bullying

Posted February 22nd, 2013 by

Teasing.Physical violence.Staring.Social isolation.Name-calling.

A photo shared by one of our members, Lissa, who has guttate psoriasis and plaque psoriasis.  Click the image to read our interview with this inspiring psoriasis blogger!

Many of our members with psoriasis, a chronic autoimmune condition that can produce red, scaly patches and other skin symptoms, report experiencing various forms of bullying while growing up.  One relays the story of a teacher who repeatedly sent her to the nurse’s office, assuming that she had a contagious condition.  Another recalls receiving notes in her locker informing her that she was not welcome in gym class or study group.  And yet another shares that her classmates spread sexual rumors that her psoriasis was really rug burn and voted her most likely to get pregnant in high school.

These are just a few heart-wrenching examples of the stigma, ignorance and misinformation that often surround psoriasis, which is not contagious. For these members, the bullying they encountered growing up often had a major psychological impact that included hurt feelings, self-consciousness, depression, anger, loneliness and dating difficulties.  Some report that it ultimately made them stronger, however.  Have you been mistreated as a result of your psoriasis?  Share your stories with others who can truly relate in PatientsLikeMe’s growing psoriasis community, which now has more than 5,000 members.

Also, find answers and take control of your psoriasis care plan by learning from PatientsLikeMe members’ treatment evaluations and seasonal survey answers as well as our ongoing dermatologist interview series, which delves into investigational psoriasis treatments currently in clinical trials and other psoriasis treatment trends.  Stay tuned to the blog for another dermatologist interview very soon!

What Is Health?

Posted February 20th, 2013 by

It seems like a basic question, but at PatientsLikeMe, we’ve spent a lot of time thinking about what it means.  Check out Co-Founder and Chairman Jamie Heywood’s thought-provoking presentation below at the Swiss Re Centre for Global Dialogue’s “Future of Human Longevity” conference.

Can you really understand concepts such as health, mobility or well-being without measuring or comparing them?  See why Jamie argues that you can’t – and also why one’s “health span” may be more important than one’s “lifespan.”  Click the image below to tune in.

Click on this screenshot to begin the slideshow presentation.

*After clicking the image above, select the “08:45” link to your left to start the presentation.

Aetna and PatientsLikeMe Help Empower Members Through Collaborative Program

Posted February 14th, 2013 by

HARTFORD, Conn. and CAMBRIDGE, Mass., February 14, 2013 – Aetna (NYSE: AET) and PatientsLikeMe today announced a new program to help Aetna members improve the way they live with various health conditions. Through a one-year pilot program, Aetna is directing its members to PatientsLikeMe so they can connect with others who have the same condition, and access real-world symptom, treatment and outcome reports.

Aetna members can now receive information about PatientsLikeMe through Aetna Navigator®, Aetna’s secure member website, and access a customized PatientsLikeMe landing page. Aetna nurse case managers will also encourage members to use PatientsLikeMe to learn more about specific health conditions. Aetna is the first health insurance company to develop this type of integrated program with PatientsLikeMe.

“PatientsLikeMe is one of the most innovative and well-respected online patient resources. We share a common focus to empower people to make better health care decisions and lead healthier lives,” says Susan Kosman, R.N., Aetna’s chief nursing officer. “Some of the most useful information comes from the people who know firsthand what it’s like to live with a disease. Our collaboration will help us learn how Aetna members can benefit from real world information and patient-to-patient contact to make better, more informed health decisions.”

PatientsLikeMe Executive Vice President of Marketing and Patient Advocacy Michael Evers adds, “Aetna’s focus to build a stronger, more effective health care system through collaboration with others makes Aetna a pioneer among payors and the perfect ally for PatientsLikeMe. Working together, we’ll connect members with information and resources to live better, so that patient experience continues to propel changes in our health care system.”

PatientsLikeMe connects more than 175,000 patients who are looking to share information on their health condition and learn from others who have similar experiences. Patients can create and share online health profiles that capture their disease experiences, including symptoms and treatments. This information helps create new insights into these diseases that can help advance medicine.

As part of the collaboration, PatientsLikeMe will share information, de-identified in accordance with HIPAA, with Aetna about how their members are using the website. Aetna plans to use this information to provide valuable services and tools to its members. Aetna will not share any Personal Health Information (PHI) or Personally Identifiable Information (PII) with PatientsLikeMe as part of this program.

About Aetna
Aetna is one of the nation’s leading diversified health care benefits companies, serving approximately 37.3 million people with information and resources to help them make better informed decisions about their health care. Aetna offers a broad range of traditional, voluntary and consumer-directed health insurance products and related services, including medical, pharmacy, dental, behavioral health, group life and disability plans, and medical management capabilities, Medicaid health care management services and health information technology services. Our customers include employer groups, individuals, college students, part-time and hourly workers, health plans, health care providers, governmental units, government-sponsored plans, labor groups and expatriates. For more information, see www.aetna.com.

About PatientsLikeMe
PatientsLikeMe is a patient network that helps improve 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 has become a trusted source for real-world disease information and a clinically robust resource that has published more than 25 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Give the Gift of Life on National Donor Day

Posted February 13th, 2013 by

Valentine’s Day is all about showing your love for your significant other.  But what if it were also about showing your love for perfect strangers?

February 14th is National Donor Day, a day of awareness about how registering to be an organ donor can give someone a second chance at life.  Does your driver’s license currently indicate that you are a donor?  If not, and you’d like your organs (as well as potentially your tissues, marrow, platelets and blood) to help someone else after you are no longer here, sign up to be a donor today.  In the time it takes you to register, someone with a life-threatening condition will be added to the waitlist.

Wondering if your registration will really make a difference?  Here are a few statistics that help underscore the need for more donors:

  • 117,001 people are currently waiting for an organ transplant
  • 18 people will die each day while waiting for a new organ
  • 1 organ donor can save up to eight lives total

In particular, there is a need for more minority donors.  While organs are not matched according to race/ethnicity, there is a greater likelihood that compatible blood types and tissue markers – the critical elements of the matching process – will be found among members of the same ethnicity.  Thus, a greater diversity of donors could potentially increase access to transplantation, which is essentially the only treatment for end-stage organ failure (e.g. kidney failure, heart failure, liver failure).

Are you awaiting an organ transplant – or the recipient of one?  Join PatientsLikeMe to connect with others like you.  We have thousands of transplant patients among our members, including those with (or still awaiting) a heart transplant, kidney transplant, liver transplant, lung transplant and pancreas transplant. What’s it like to go through organ transplantation? Read our in-depth Patient Voice report on “Life After a Transplant” as well as our insightful interviews with liver transplant recipient Amy Tippins and kidney transplant recipient Michael Burke.

Taking Psoriasis Treatment to the Next Level: An Interview with Dermatologist Dr. Jerry Bagel

Posted February 11th, 2013 by

Board-Certified Dermatologist Dr. Jerry Bagel, MD

A nationally recognized psoriasis expert, Dr. Jerry Bagel, MD, has been an investigator on more than 45 clinical trials seeking new treatments for psoriasis and other skin conditions.  In addition to treating patients at his private dermatology practice in East Windsor, New Jersey, Dr. Bagel serves as Senior Attending Physician at the Princeton University Medical Center and Director of the Psoriasis Treatment Center of Central New Jersey.   He is also a three-term member of the National Psoriasis Foundation’s Medical Advisory Board.  What investigational treatment for psoriasis is he currently studying?  And what does he wish more psoriasis patients knew?  Check out our insightful interview below.

1. What led you to focus your research on psoriasis?

I started studying psoriasis when I was resident at Columbia-Presbyterian in 1982-1985. At that time I would spend six months on in-patient service with 30 hospitalized psoriatic patients who would stay in for treatment for a month.   And I realized the burden of disease – the psychological, emotional and physical impact of this disease on people.

So when I opened up my private practice in 1985, I decided that psoriasis treatment and care of psoriasis patients would be a major part of my professional career and so I started seeing a lot people with psoriasis.  I started doing research in 1992 and then just kept working with pharmaceutical companies and developing our own protocols for research into the treatment of psoriasis, trying to find better treatments, safer treatments, more effective treatments.

2. Tell us about some of your most recent clinical trial findings.

The most recent clinical trial I’m doing as of today is IL-17 receptor antibodies with Amgen that is remarkable, using subcutaneous injections once every other week.   People are getting clear within 2-4 weeks, so it’s really a quite effective treatment.  I mean, obviously we don’t know [everything yet], but so far it’s been good at our facility, and the data I’ve read about it seems to be pretty good.  So I think it could take the treatment of psoriasis to another level in the sense that over half the people will probably clear and probably 85% will have a very effective level of clearing.  So it’s going to take it to another level of clearing given what existed before.

3. Speaking of what existed before, what current treatments are most effective in your experience?

Well, we still use phototherapy, but people have to come in three times a week for about 12 weeks. It works about 75% of the time, but people only stay clear for about six months maybe 75% of the time.  So in the end it only works well for about 50% of the people.  But it’s totally safe, so therefore the benefit ratio is high.  We also do all the biologic agents, like Enbrel and Humira and Stelara, and they’re quite effective treatments.

In fact, Enbrel and Humira are FDA-approved for the treatment of psoriatic arthritis as well – and up to 25% of people with psoriasis have psoriatic arthritis.  So it helps the arthritic component of psoriasis as well.   So we do use the biologics, although sometimes we have to tweak them with some systemic therapies.   Sometimes we use cyclosporine, sometimes we use methotrexate.  But the treatment of psoriasis today is certainly a lot better than it was say 10 years ago.

4. Do you have any dietary recommendations for psoriasis patients?

I think diet helps, but I don’t think diet necessarily clears psoriasis for very many people, if any.  But we know that psoriasis is associated with the metabolic syndrome, and many patients are obese and have diabetes, which are inflammatory triggers.  I think patients that eat a low-inflammatory diet – with more fish like mackerel, salmon or anchovies, and less red meat – tend to be better.  Staying away from fatty foods like animal fats, and eating more vegetable fats like nuts, tends to be helpful.  Also, I do think that weight loss tends to help people with psoriasis.  The other culprit is alcohol.  Alcohol is not good for people with psoriasis.

5. What is something you wish more psoriasis patients knew?

I wish more psoriasis patients knew that there are physicians providing effective care for psoriasis.  For instance, today I had a young woman who was 23 years old.  She came into my office with psoriasis covering about 20% of her body.  She’d been to three dermatologists before me, and two of them told her there was nothing they could do about it, and she should learn to live with it.  So I wish there was more education for people with psoriasis to know there are dermatologists or psoriasis caregivers who are interested in the treatment of psoriasis – and a better way of connecting people with psoriasis with the physicians interested in treating psoriasis.

Get Pumped for American Heart Month

Posted February 7th, 2013 by

February Is American Heart Month

You’ve all heard this fact before:  heart disease (including heart attacks and heart failure) is the leading cause of death among American men and women, claiming around 600,000 lives each year.  But what are you doing about it?  Are you and your family working on the controllable risk factors that play a role in this largely preventable disease?

For example, how are you doing with these controllable risk factors?

Cholesterol levels
Blood pressure
Tobacco use
Physical activity

During American Heart Month this February, it’s the perfect time to ride the momentum of your New Year’s resolutions and move towards a more heart-healthy lifestyle.  That means making small to large changes in your daily routine that really pay off.  From what you eat to how much walking you do, take stock of what you can control…and share your experiences with other PatientsLikeMe members.

Not sure where to start?  Use a BMI calculator to find out whether your Body Mass Index (BMI) falls within a healthy range.  Also, make sure you go in for an annual checkup this year, which will give you and your doctor a chance to look at your cholesterol, blood pressure and heartbeat.  That way, if there’s a red flag anywhere, you can start doing something about it sooner rather than later.

Also, it’s always a good idea to brush up on the warning signs of a heart attack – and how they may be different for men and women.  Here’s to keeping the blood pumping this year and many more!

The Ups and Downs of Parkinson’s Disease

Posted February 5th, 2013 by

We are all too aware that Parkinson’s disease (PD) is a progressive illness, with tremors, difficulty walking and other symptoms usually getting worse over time.  Here at PatientsLikeMe, and in the clinic, that progression is measured with the Parkinson’s Disease Rating Scale (PDRS). Although you can never really simplify a whole disease down to a few numbers, having that numerical description helps your health care team track your disease and how you are doing over the long haul.

But if you or a loved one has PD, you know that a decline over time is only part of the story. You probably have good days and bad days, depending on all kinds of factors. Understanding those ups and downs is also big part of living with PD. It may also be a big part of treating it.

A Sample PDRS Chart Showing Ups and Downs in Disease Progression

In collaboration with PatientsLikeMe’s Paul Wicks and MIT’s Max Little and Alex Pentland, I have been studying those ups and downs. In our freely available paper recently published in the Journal of Medical Internet Research, we explored mathematically the dynamics of the PDRS. (If you love math, this is the paper for you!)

One of the most important things we found is that these random fluctuations seen in many patients are large enough that they can be considered “clinically meaningful” – just as big as those long-term progression changes that doctors and nurses consider when they think about what treatments may be best for you. So, it is especially important for your team to know how you’ve been doing over the last few weeks, and not just today.

Knowing your own ups and downs may help you figure out your best possible treatment plan. We also hope that by studying the data shared by lots of people like you, we can understand PD better, which will ultimately lead to better treatments for everyone. As always, thanks for sharing!

p.s. For those of you keeping up, yes, the Max Little mentioned above is the very same applied mathematician we’ve partnered with to help advance his groundbreaking research at the Parkinson’s Voice Initiative.  Don’t miss this recent CNN profile of Max’s exciting project, which is based on the theory that the voice (as recorded via a simple phone call) can be used as a biomarker for PD progression.

PatientsLikeMe member tvaughan

First-Ever Rheumatoid Awareness Day

Posted February 2nd, 2013 by

In an ongoing effort to raise awareness, the Rheumatoid Patient Foundation (RPF) has now established February 2nd as Rheumatoid Awareness Day. This is the first time ever that a day has been designated for rheumatoid disease and it will give a voice to the millions who are living with this condition.


Rheumatoid disease (also known as rheumatoid arthritis) affects nearly 2 million people in the U.S. and one percent of people worldwide. It’s a progressive inflammatory disease causing joint and organ damage that can lead to severe pain and joint disabilities. Studies have also shown that rheumatoid disease has an impact on the heart causing higher incidence of stroke for patients.

Want to get involved? The RPF is hosting several social media events and is asking everyone to share educational materials via social sites and blogs to raise awareness.

You can also connect with other rheumatoid arthritis (RA) patients just like you on PatientsLikeMe. Nearly 5,000 RA patients are tracking their health and learning from each other’s shared experiences every day. Add your voice to this growing community.

Mayo Clinic. 2011. Mayo Clinic Determines Lifetime Risk of Adult Rheumatoid Arthritis. http://www.mayoclinic.org/news2011-rst/6137.html?rss-feedid=1

Jesper, L et al. British Medical Journal. Risk of atrial fibrillation and stroke in rheumatoid arthritis: Danish nationwide cohort study. http://www.bmj.com/content/344/bmj.e1257

A Good Surprise: An Interview with Fibromyalgia Member DarkAuburn

Posted February 1st, 2013 by

Did you know we now have more than 30,000 members in our fibromyalgia community?  In honor of this major milestone, we decided to interview DarkAuburn, who joined in 2009.  She’s a three-star member, which means she’s earned our top star rating for sharing complete, in-depth information about her fibromyalgia symptoms, treatments, quality of life and much more.  In addition, she has opted for a public profile, which means that anyone on the Internet (whether a PatientsLikeMe member or not) can learn from her detailed condition history.  Check out our interview with this veteran member below.

PatientsLikeMe member DarkAuburn with her son

1. Tell us a little about the PatientsLikeMe fibromyalgia community.

I was not expecting much when I found the site. I thought it would be more of an informational, non-involvement sort of site. I was surprised, as in a good surprise. I don’t know many people where I live that have fibromyalgia, and I didn’t realize how welcoming this site would be. I found people who, like me, wanted answers. The sharing of information and support was a nice thing to find.

2. What’s it like to have access to the experiences and data of tens of thousands of other fibromyalgia patients?

It’s staggering. I didn’t know much about fibromyalgia before I was diagnosed. I can’t say I’m an expert now either. But the information has helped me better communicate with my doctor.

3. As a wife, mother and grandmother, how has fibromyalgia affected your family?

People ask my husband all the time how I am doing. He will tell them that I have good days and bad days, and we have learned to take each day as it comes. When I told my children, they were concerned. My daughter is a research junkie, and she looked it up and explained to her brother what I have. His response was, “That explains a lot.” Since I don’t get to see my children and grandchildren on a daily basis, I just deal with fibromyalgia and play with my grandchildren.

4.  What’s the most important thing you’ve learned from other patients?

I have learned that I am not alone in this.