The Value of Openness: The PatientsLikeMe Blog

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

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

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

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

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

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

Mobile.  Active.  Independent.  How close are you or the patient in your life to those attributes?

October is National Physical Therapy Month, which is designed the highlight the role of physical therapy (PT) in restoring and improving motion.  According to the American Physical Therapy Association (APTA), the benefits can include enhanced quality of life as well as avoiding surgery or the long-term use of prescription medications.

The theme for this year’s event is Sports Injury Prevention Across a Lifespan.  ”Participating in sports the right way is the key to avoiding injuries that can sideline you for a significant amount of time,” writes the APTA.  Learn more about preventing sports injuries and the role of PT at www.MoveForwardPT.com.

Here at PatientsLikeMe, 700 patients report using PT as part of their treatment regimen, and nearly 300 of them have submitted treatment evaluations of their experience.  The most common reported dosage is “weekly,” and the most common reported reason for having PT is stiffness/spasticity.

What do these patients have to say?  Here’s a sampling of their feedback:

• “I had not realized how badly I walked and moved until my PT evaluation and treatment. PT has helped me regain muscle movement and has helped the leg/foot pain go away.” - Patient with Parkinson’s disease

• “If it tires you, stop. Do only light, non-resistant exercise. If it tires your muscles or causes pain, tell them immediately. Pain is not gain, it is loss of function.” - Patient with primary lateral sclerosis (PLS)

• “PT actually does help in building up weakened muscles, especially in my legs. I am very sore after I leave, though. It works itself out after an hour or so at home.” - Patient with fibromyalgia

• “I am walking better with and without the walker.  I work out for an hour and fifteen minutes a day now. Monday, Wednesday and Friday with therapist, and the other four days alone.  I WILL WALK ALONE AGAIN.” - Patient with MS

Have you tried PT? Share your experiences at PatientsLikeMe today.

In August, we recognized Psoriasis Awareness Month on our blog and shared some facts and figures about this autoimmune disease, which affects 7.5 million Americans. One of the statistics we shared is that psoriasis often occurs in conjunction with other serious health conditions, including diabetes, hypertension, heart attack and obesity.

What these conditions share is that they can often be improved by reaching an ideal body weight. But losing weight – and maintaining it – is easier said than done. That’s why the National Psoriasis Foundation has launched the Healthy for Good campaign. Here’s what Catie Coman, Director of Communications at the National Psoriasis Foundation, tells us about this new online program.

1. What is Healthy for Good, and why should patients join in?

Healthy for Good (www.healthyforgood.org) is program designed to help people lose weight, while raising funds for a cure for psoriasis and psoriatic arthritis. It’s unique in that is uses a public platform and the fundraising tactic of “friends asking friends” to help people reach their goals.

Forty percent of people with psoriasis have metabolic syndrome, a cluster of conditions such as high blood pressure, diabetes and abdominal obesity. By joining Healthy for Good, they’ll get tools to stay motivated, lose weight and reduce their risk factors for these associated conditions. They’ll also be able to support research to find a cure for psoriatic diseases.

2. How will Healthy for Good reduce the risk factors for these conditions?

Healthy for Good may reduce the risk factors for these other serious conditions by providing participants with a platform to lose weight safely and set achievable goals. Healthy for Good supports a weight loss goal of up to two pounds per week. Participants will make a commitment to eat right and exercise—and reduce their risk for other serious diseases while they get healthy.

3. How is this program different from other health and fitness campaigns?

First, it gives people a chance to go public. Research shows that people are far more likely to achieve a goal when they put their reputation on the line—by publicly announcing their intentions. Healthy for Good helps people be accountable by giving them a platform to broadcast their commitment.

Also, it will help people stick to their resolution by asking others to support their efforts. For every pound that someone commits to lose, they will ask loved ones to donate $1, $5, $10 or more to help the National Psoriasis Foundation find a cure for psoriasis and psoriatic arthritis.

Participants will track their progress each week, and the Healthy for Good tracker will calculate their overall progress toward their goal. In order to help people stay motivated, each person who meets their weight-loss and fundraising goals will be entered to win prizes.

4.  Is Healthy for Good only available to psoriasis patients or can anyone join?

Anyone can join Healthy for Good. People without psoriasis and psoriatic arthritis can use this program to overcome weight loss obstacles and lose the pounds, while helping others at the same time. And it’s a great way for people with psoriasis and psoriatic arthritis to get healthy, reduce their risk of other serious associated diseases and raise funds to find a cure.

Today, October 3rd, is World MSA Day.

MSA stands for multiple system atrophy, a degenerative neurological disorder that causes symptoms similar to Parkinson’s disease. As a result, it is included in a group of diseases called “Parkinson-plus syndromes,” which have the classical symptoms of Parkinson’s (such as tremor and stiffness) as well as additional physical and mental features. In addition, these diseases typically do not respond to Parkinson’s treatments.

The theme for this year’s World MSA Day is “A Mile and a Candle.” All around the globe, MSA activists will be lighting a candle today at 8:00 p.m. local time for one hour. Participants are being asked to light a candle for each person they know who is living with MSA or has been lost to MSA. As candles are lit across every continent, a virtual 24-hour wave of light will be created as it moves from time zone to time zone.

In addition, activists will be walking a mile (or more) in honor of MSA, then reporting their mileage on the “A Mile and a Candle Counter Page.” The goal is to tally enough miles from enough participants to equal 24, 901 miles, which is the circumference of the earth at the equator. If this goal is accomplished, MSA Day supporters will have “walked around the earth” to raise awareness of this little-known disease.

Here at PatientsLikeMe, 485 patients report MSA, with 54% of them female and 46% of them male. The most common age bracket reported is 50-59 years of age, while some of the most commonly reported symptoms include excessive daytime sleepiness, sexual dysfunction, emotional lability and bladder problems. Get to know our MSA patients today and, if you can, light a candle or walk a mile in their honor.

September is National Cholesterol Education Month, which means it’s a good time to find out your total cholesterol levels as well as your HDL (“good” cholesterol) and LDL (“bad” cholesterol) levels. Have you had them checked in the last five years?

More than 102 million Americans have a total cholesterol level at or above 200 mg/dL, which is beyond healthy levels, and more than 35 million of those individuals have levels of 240 mg/dL or higher, which puts them at high risk of heart disease. That’s a major concern given that heart disease is the leading cause of death in the United States.

Fortunately, high cholesterol can be lowered with lifestyle changes – including losing weight, eating healthier, exercising and quitting smoking – as well as medication. But to start turning things around, you have to know there’s a problem. Even children and adolescents can have high cholesterol, especially if they are overweight.

Here at PatientsLikeMe, 335 patients report hypercholesterolemia (high cholesterol) while 235 patients report hyperlipidemia (high lipids in the blood, including cholesterol and triglycerides.) Across both conditions, some of the top reported medications include Simvastatin, Atorvastatin, Pravastatin and Rosovastatin.

If you’re unsure of your cholesterol levels, talk to your doctor at your next visit. And if you’re already aware that your levels are high, reach out to other patients like you today at PatientsLikeMe. Changing your lifestyle isn’t easy, but it’s easier when you have a community to lean on for support, answers and advice.

We’ve shared a lot of great photos on the blog lately of run/walk teams sponsored by PatientsLikeMeInMotion this year. Now you can learn more about this dynamic program in a more dynamic format with our new PatientsLikeInMotion video. Find out how to get involved, what sponsorship entails and how much PatientsLikeMe has donated towards our sponsored teams’ fundraising efforts since the program’s inception.

Ready to get out there and raise awareness and funds for your condition? Let us support you every step of the way. Sign up for PatientsLikeMeInMotion today.

Today, September 21^st, is World Alzheimer’s Day. For this annual event, Alzheimer’s associations around the globe are coming together to raise awareness about Alzheimer’s disease, which affects an estimated 36 million people worldwide. This degenerative brain syndrome impacts memory, thinking, behavior and emotion. Eventually, those affected require assistance with all aspects of daily life.

The theme of this year’s event is “Faces of Dementia,” and it is designed to show how this incurable disease knows no social, economic, ethnic or geographic boundaries. In addition, it pays tribute to those who work tirelessly to support and care for people with dementia. The need for such care will only increase as the world’s population ages. By 2050, the global prevalence of Alzheimer’s is expected to triple (115 million).

Here at PatientsLikeMe, we have both patients (or caregivers of patients) who have reported Alzheimer’s disease, as well as Early Onset Dementia, which is the term used when Alzheimer’s is diagnosed before the age of 65. If someone you love has exhibited signs of dementia – including memory loss, word-fishing, personality changes and difficulty performing routine tasks – talk to a healthcare professional as soon as possible.

“We founded PatientsLikeMe on the concept that sharing health data could lead to a more empowered patient and better overall healthcare system. It’s an exciting and giant step forward for us as an industry as we unite around making health data more accessible to those that matter most – the patients.”

– Ben Heywood, PatientsLikeMe Co-Founder, President

Today the first-ever Consumer Health IT Summit is taking place in Washington, DC. Sponsored by a division of the US Department of Health and Human Services (HHS), this new initiative is designed to empower individuals to be more engaged in their health through the use of health information technology (IT).

During the summit, both government health agencies and private sector organizations like PatientsLikeMe will be highlighting the ways they plan to support your access to electronic health data. For example, HHS Secretary Kathleen Sebelius unveiled new proposed rules that would expand the rights of patients to access their health information as well as a model privacy notice template that can be used in the process. In addition, HealthIT.gov, a new resource for consumer health empowerment, was announced.

PatientsLikeMe is participating in this important initiative by making our own pledge to you, which we are committed to completing by spring 2012.

“We pledge to make it easier for individuals and their caregivers to have timely access to their health information in a convenient, useable format through our website.  As we continue to encourage and enable them to use this information to improve their health and their care, we pledge to:

1) improve patients’ accessibility to their personal health information by making our Doctor Visit Sheet (a document detailing an individual’s health data and experience) downloadable through multiple formats, including electronically readable formats like PDFs and the “Blue Button” ASCII text standard format;

2) encourage patients to dialogue with their peers and providers about the benefits of accessing and understanding their health data;

3) continue “Putting Patients First” by building a website that helps them to share, access and learn from their health information online.”

What’s a Blue Button, you ask? An open government initiative, Blue Button represents a collaboration between the Veteran’s Administration and HHS to develop an online feature that would enable Veterans and Medicare beneficiaries to easily read, use and share their personal health information with providers and others they trust. The ASCII text file format was selected for its ease of use by individuals, while allowing computers to easily “read” the information.

Every September, the Substance Abuse & Mental Health Services Administration (SAMHSA) observes Recovery Month.  The goal is to promote the societal benefits of treatment for substance use and mental disorders, celebrate people in recovery, recognize treatment providers and spread the message that recovery is possible.  As the SAMHSA slogan says, “Prevention works, treatment is effective and people recover.”

Recovery Month also inspires millions of people to raise awareness about addiction, share their stories of recovery and assist others who are still struggling. As one person writes, “Since I have attained recovery, I have accomplished all of my dreams - something I never would have imagined 26 years ago, when my dependence to alcohol and narcotics had created a hopeless life.”

Do you have a recovery story of your own?  Add your voice to this month-long celebration.  Or if you’re still struggling – or know someone who is – you may want to consider downloading SAMHSA’s free mobile app for iPhones/iPads/iPods. It’s a Treatment Locator that helps connect people with the services they need, whether it’s for mental health services or substance abuse.

Here at PatientsLikeMe, thousands of patients are sharing experiences, support and data regarding their mental health conditions and addictions.  For example:

• 7,619 patients report generalized anxiety disorder (GAD)
• 3,894 patients report tobacco addiction
• 3,027 patients report obsessive compulsive disorder (OCD)
• 2,046 patients report alcohol addiction
• 1,917 patients report drug addiction
• 1,416 patients report bipolar II disorder

If you are affected by a mental health condition or addiction – either as a patient or a caregiver – we encourage you to join our growing community. Learn about the path to recovery for others and connect with those who can relate.

Last week, we told you about the Spotlight on Psoriasis and Psoriatic Arthritis Online Film Festival and how you could participate. But for those of you who don’t have psoriasis and don’t know much about it, we wanted to tell you a little more about this chronic condition as August is Psoriasis Awareness Month.

An autoimmune disease affecting as many as 7.5 million Americans, psoriasis was recently in the headlines when reality star Kim Kardashian was diagnosed with the condition after developing red patches on her legs and torso. As she soon learned from her doctor during an episode of “Keeping Up with the Kardashians,” the disease is a lifelong one, and there is no cure. Her story also demonstrated the tendency for psoriasis to run in families, as her mother Kris Jenner also has the condition.

Like many people, Kardashian’s first reaction to the diagnosis was one of embarrassment and self-consciousness. Many people with psoriasis report that they have limited social activities, dating and the use of public swimming pools due to the often highly visible condition. In fact, a 2009 survey by the National Psoriasis Foundation found that nearly three-fourths of respondents say that psoriasis has had a negative impact on their quality of life.

The goal of Psoriasis Awareness Month is to highlight the life-altering impact of psoriasis and psoriatic arthritis and dispel the many myths surrounding it. With that objective in mind, here are a few quick facts to raise your knowledge.

Did you know that…

• …psoriasis is a serious autoimmune disease that causes the skin to crack, itch and bleed?
• …up to 30% of people with psoriasis will develop psoriatic arthritis, which causes pain and swelling of the joints?
• …psoriasis is not contagious and cannot be transmitted through skin-to-skin contact?
• …psoriasis often occurs with other serious health conditions, including diabetes, hypertension, heart attack, obesity and depression?

One of the best ways to better understand psoriasis is to get to know someone with the condition. Here at PatientsLikeMe, 318 patients report psoriasis, and 176 patients report psoriatic arthritis. Women are disproportionately affected, representing 69% of our psoriasis members and 82% of our psoriatic arthritis members. Across both conditions, one of the most commonly reported treatments is methotrexate (Trexall).

Learn more by checking out the profile of one of our psoriasis members today. Also, don’t forget about the Spotlight on Psoriasis and Psoriatic Arthritis Online Film Festival. Starting Tuesday, August 30th, anyone can watch and vote on submitted videos at www.psoriasis.org/pam.

Welcome to the third installment of our new weekly podcast series called “It’s Friday – Let’s Journal Club.”

This week’s guest interview is with Sarah Taylor, a type 1 diabetes patient, registered nurse (RN) and friend of the company. Sarah stopped by PatientsLikeMe headquarters last Friday to talk about being diagnosed with type 1 diabetes at age nine and how PatientsLikeMe has become a part of her life today.

After this engaging “Journal Club” session, PatientsLikeMe’s Aaron Fleishman sat down with Sarah to learn more about how type 1 diabetes affects her day-to-day decisions – from eating to exercising – and how as a nurse she envisions shared patient data helping medical providers. Listen in below to hear what that might look like and also what advice she has for those who are newly diagnosed with type 1 diabetes.

“I got this call from my brother Stephen, and he said the news doesn’t look good. At that point, he’d been through enough processes to know what that meant – he had ALS. So I began this journey with my brother and my family…. We were thinking there had to be a way to make this about the patient. But it started like everyone else. You get that phone call, and your life changes.” - Jamie Heywood, Co-Founder

Recently, we launched a new and improved About Us page that included a short video about our company history. Now, we’re pleased to unveil a longer, more in-depth video that allows you to hear our founding story from four PatientsLikeMe executives and learn what drew each of them to become a part of our groundbreaking concept.

Tune in below to hear where it all started and why, five years later, we’re committed to continuing the journey we’re all on – as a company, as patients and as family members of those affected by disease.

You can also watch this insightful piece (~15 minutes) in three smaller segments:  Chapter 1, Chapter 2 and Chapter 3.

Sponsored by the health blog Dose of Digital, the Dosie Awards were created to recognize the best examples of social media in the healthcare industry. Now in its second year, this award program was expanded in 2011 to include both Judges’ Choice and People’s Choice Awards. Within each category, a Gold, Silver and Bronze medal is bestowed.

PatientsLikeMe is proud to be the recipient of the 2011 Judges’ Choice Gold Award for Best Patient Community (Non-Brand Controlled). A distinguished group of industry leaders judged this category, and we are extremely honored that they deemed us “the best of the best.” As a result of this award, we can now display our “Judge’s Choice Gold Dosie Award” badge on the PatientsLikeMe website.

Check out the full list of 2011 Dosie Award winners here.

“Patients know what patients want to know.”
– Dave deBronkart

Blogger, author and international keynote speaker Dave deBronkart is a familiar name at PatientsLikeMe, as his writings and health talks tend to strike a chord with us.

You see, “E-Patient Dave,” as he calls himself, has a story that underscores exactly why we founded PatientsLikeMe. After being diagnosed with Stage IV kidney cancer, Dave faced a grave prognosis. He read that the median survival for his condition was just 24 weeks from diagnosis. Then he joined a social network for cancer patients and learned of a treatment called interleukin-2 that most patients never hear about. Happily, this treatment would eventually save his life.

Today, E-Patient Dave is a healthy fellow as well as an outspoken advocate for many things we support. For example, he believes patients are “the most underutilized resource in healthcare,” and that patients should have access to their own medical data. He argues that only with complete data can a patient crack the code on his or her own health situation. As co-sponsors of the Declaration of Health Data Rights in 2009 and proponents of our own unique Openness Philosophy, we wholeheartedly agree.

To learn more about Dave’s remarkable story, as well as his plea to the medical world to “let patients help,” check out his recent TEDx Talk below.  (If you’ve never heard of TED or TEDMED, it’s another concept we support because of how it generates ideas and stories that produce “wow” – another core value of our company.  Our Co-Founder Jamie Heywood has even appeared on their stage for his own TEDMED talk.)

Finally, here is a powerful anecdote from E-Patient Dave about how other patients continued to help him throughout treatment.  ”The side effects of interleukin-2 are, as the American Cancer Society puts it, ‘often severe and rarely fatal,’” he says.   “That statement left me pretty powerless, so I collected 15 firsthand stories from my patient peers who had the treatment.  And when my side effects hit – the first was uncontrollable chills and shaking – I knew what is was.  I knew what to expect, and I knew how other patients like me had gotten through it.”