6 posts tagged “treatment evaluations”

Your data doing good: A collaboration with Walgreens

Posted December 13th, 2015 by

During #24DaysofGiving this December, we’re highlighting all the good your health data is doing within – and well beyond – the PatientsLikeMe website. Here’s another great example. Did you know the side effect data you report on your PatientsLikeMe treatment evaluations is helping pharmacy customers understand how the medications they take may affect them, too?

It started back in February this year when we kicked off a new collaboration with Walgreens, the nation’s largest drugstore chain. The idea was simple; by joining forces, we could help bring your experiences to many more people making treatment decisions. Now anyone researching a medication or filling a prescription on Walgreens.com can see a snapshot of how PatientsLikeMe members have been impacted by that medication, including side effects and their severity. There are currently about 6,000 medications at Walgreens pharmacies where others can learn from your experiences, and the data (de-identified!) is updated daily based on what you report on PatientsLikeMe.

This partnership marks the first time a company has displayed your real-world data on their website. Why did they do it? Because your data and experiences can help patients, wherever they are, understand more about the treatments they’re taking, and make more informed health decisions. Our partners understand and recognize that.

Here’s another reason (one you can probably relate to). To find side effect information for a treatment, you normally have to scour the Internet or read that sheet of paper that gets stapled to your prescription bag. (Does anyone really read that?) But information like that only represents a tiny fraction of the population, usually just a few hundred or at most a few thousand who took part in the clinical trial for the treatment. The thing is, you might be taking the treatment off-label. In fact, more than one in five outpatient prescriptions written in the U.S. are for off-label uses, and 75 percent of these uses have little or no scientific support[1]. This means the treatment may affect people a little bit differently. So having real-world experiences like yours gives a broader picture for people trying, or deciding to try, that treatment.

The next time you record a treatment evaluation, know that you’re doing much more than you think. By sharing information about side effects, you’re making it easier for someone else to make a better decision for them. We’re truly better, together.

Share this post on Twitter and help spread #dataforgood during #24DaysofGiving.

 


[1] Radley DC, Finkelstein SN, Stafford RS. Off-label prescribing among office-based physicians. Arch Intern Med. 2006;166(9):1021-1026. doi: 10.1001/archinte.166.9.1021.


Add Your Voice During National Recovery Month

Posted September 10th, 2012 by

National Recovery Month Takes Places Every September

Are you in recovery from an addiction or mental health disorder – or do you know someone who is?  The theme for National Recovery Month 2012, sponsored by the Substance Abuse and Mental Health Services Administration (SAMHSA), is “Join the Voices for Recovery: It’s Worth It!”

There are several different ways to participate in this annual event, which promotes the societal benefits of prevention and treatment for mental and substance use disorders:

Now in its 23rd year, National Recovery Month was founded on the belief that we should celebrate the gains made by those in recovery, just as we would with those who are managing other health conditions.  The goal is to spread the positive message you can live a healthy and rewarding life with the aid of treatment and mental health services.

Are you looking to start on the road to recovery?  Reclaim your life by calling SAMHSA’s National Helpline (1-800-662-HELP), where you can be assisted in both English and Spanish.  If you’re already in recovery, find solidarity and support by connecting with others like you at PatientsLikeMe.  We have thousands of patients sharing their experiences with numerous disorders, including:

Exchange stories and tips – as well as in-depth treatment evaluations – with those who can truly relate today.


Strengthen Your Knowledge During National Osteoporosis Month

Posted May 18th, 2012 by

Of the estimated 10 million Americans with osteoporosis – which means “porous bones” – 80% of them are women.  That’s why we wanted to shine a spotlight on this condition during National Women’s Health Week.  Approximately one in two women over the age of 50 will break a bone because of osteoporosis.  Even more alarming is the fact that 24% of hip fracture patients age 50 and older die in the year following their fracture.

Talk to Your Family About Bone Health During National Osteoporosis Month

Now that you know the facts, it’s time to talk to your family about what you can do to prevent this scenario.  The National Osteoporosis Foundation’s Generations of Strength Campaign encourages women (and men!) to start conversations about bone health and family history during National Osteoporosis Month.  Have either of your parents experienced a broken hip, spine or wrist, for example?  What about height loss or a spine that curves forward (two possible signs of broken bones in the spine)?  Research shows that genetics plays a major role in osteoporosis.  If either of your parents has a history of osteoporosis or broken bones, you are more likely to break a bone.

Do You Have a Parent Who's Experienced Broken Bones, Height Loss or a Forward-Curving Spine?  You May Be at Risk for Osteoporosis.

Fortunately, there are preventive steps you can take.  Thirty years ago, osteoporosis was generally considered a part of normal aging.  But today researchers know a lot more about how to protect your bones throughout your life.  For example, getting enough calcium, vitamin D (which aids calcium absorption) and exercise is very important.  Eating fruits and vegetables is also beneficial to bones.  On the other hand, eating poorly, smoking, drinking too much alcohol and not exercising can cause bone loss.

In addition, researchers now have a way to detect osteoporosis before a broken bone occurs.  It’s called a bone density test, and it measures your bone density in the hip and spine.  That’s because fractures in these areas can cause more serious problems, including longer recovery time, greater pain and even disability.  Using a Central Dual Energy X-ray Absorptiometry (DXA) machine, the test usually takes 15 minutes or less.  It is non-invasive and painless.  While it does expose you to radiation, you are exposed to 10-15 times more radiation flying roundtrip between New York and San Francisco.

A Snapshot of the Osteoporosis Community at PatientsLikeMe

If you’re a postmenopausal woman – or a menopausal woman with a family history of osteoporosis or other risk factors – talk to your doctor about whether you should have a bone density test.  Men over the age of 50 should do so as well.  Based on your resulting T-score (the measurement of bone density), your doctor can determine how healthy your bones are and whether you are a candidate for osteoporosis treatments, which can help to improve bone density and even reverse the condition to some degree.  According to the 911 patients with osteoporosis at PatientsLikeMe, some of the most commonly used treatments include Fosamax, Actonel and Boniva.  (Click each treatment name to see how patients evaluate the effectiveness, side effects, cost and more.)

As we wrote at the beginning of the week, women often put their needs secondary to that of their family.  This is an example of how it’s crucial to prioritize your own health.  Because if you break your hip, how well will you be able to care for your family then?


Life with Parkinson’s Disease: What We’ve Learned

Posted December 15th, 2011 by

On Tuesday, our interview with blogger Steve Ploussard of “Attitude & Fitness Wins” revealed how one person is managing his Parkinson’s disease (PD).  Today we take a closer look at this progressive neurological condition using the data and experiences shared by our 5,920 PD members.

Age at Which Patients Experienced Their First Parkinson's Symptom

Taking a look at the makeup of our PD community, 52% are male, and 48% are female.  More than 98% identify PD as their primary condition, and just shy of 20% report experiencing their first symptom between the ages of 50 and 59.  Others report experiencing their first symptom anywhere from adolescence to their seventies.  (See the chart for a complete breakdown.)  What exactly are the symptoms of this condition?  Some of the most commonly reported include stiffness/spasticity, slowness, sexual dysfunction, memory problems, excessive daytime drowsiness and constipation.

As Steve’s interview revealed, Carbidopa-Levodopa (Sinemet) is one of the most commonly prescribed treatments for PD as it helps to control tremors, one of the most visible manifestations of the disease, and other movement dysfunctions.  Currently, more than 1,698 members report taking this medication, and 300+ of them have submitted Sinemet treatment evaluations, which review the drug’s effectiveness, side effects, dosage, cost and more.   Here’s what one patient writes about Sinemet on her evaluation:  “I notice my leg limp and motivation to walk improves dramatically when it kicks in. The tremor is much less.

Some of the Most Commonly Reported Treatments for Parkinson's, As Reported by PatientsLikeMe Members

Other commonly reported PD treatments include prescription medications such as Ropinirole (Requip), Pramipexole (Mirapex), Rasagiline (Azilect) and Amantadine; OTC supplements such as CoQ10; and surgical procedures such as Deep Brain Stimulation (DBS).  Click on the treatment name to see the data we’ve amassed for each, including hundreds of treatment evaluations submitted by our patients.

This is just a sample of the wealth of experience and data to be found at PatientsLikeMe.  Dive in today to learn more about PD.


Act Now for World Diabetes Day

Posted November 14th, 2011 by

Today Is World Diabetes Day

Today is World Diabetes Day, sponsored by the International Diabetes Federation.  An official United Nations Day since 2007, World Diabetes Day is held every year on November 14th to commemorate the birthday of Frederick Banning.  Along with Charles Best, Banning is credited with the life-saving discovery of insulin in 1922.

Why is there a need for a global diabetes day?  As the United Nations wrote in their 2007 resolution, diabetes is “a chronic, debilitating and costly disease associated with major complications that pose severe risks for families, countries and the entire world.”  Namely, it is the cause of four million deaths worldwide every year, with someone dying every eight seconds from the disease.

The global symbol for diabetes awareness is a blue circle, and supporters everywhere are encouraged to wear blue today to help spread the word about this pandemic.  You can also help get the message out about prevention.  While type 1 diabetes cannot be prevented, research shows that, in many cases, type 2 diabetes can be prevented by maintaining a healthy weight and being physically active.  Regular walking for at least 30 minutes per day, for example, has been shown to reduce the risk of type 2 diabetes by 35-40%.

We recently highlighted type 1 diabetes (and how it differs from type 2) in our blog post, “American Diabetes Month Kicks Off with T1 Day,” as well as our two-part interview with type 1 patient Michael Burke.  Here’s a little more information about type 2 diabetes, which accounts for at least 90% of all diabetes cases worldwide.  At PatientsLikeMe, 1,773 patients report type 2 diabetes, with 68% of them female and 32% male.  One of the most commonly reported treatments is Metformin, an oral anti-diabetic medication prescribed when hyperglycemia (high blood sugar) due to diabetes cannot be controlled through exercise and diet alone.  What do patients say about this drug?  Check out the 125 treatment evaluations submitted by our members, who share their experiences with dosage, side effects, efficacy, cost and more.

Diabetes University Takes Place Every Year on World Diabetes Day in Atlanta, Georgia

With a staggering 366 million people diagnosed with diabetes worldwide – and another 300 million at risk – it’s imperative that diabetes awareness and knowledge grow faster than the disease itself.  The new “Calling All Types” diabetes awareness campaign – an initiative of PatientsLikeMe and our partner BBK Worldwide – helped mark World Diabetes Day this past weekend at the Diabetes University 2011 event in Atlanta, Georgia.  Now in its 18th year, this event works to educate both medical professionals and the public.  Given that the prevalence of diabetes in Atlanta is a full point higher than the national average, Calling All Types has made Atlanta the focal point of the campaign’s initial awareness-raising activities.

Are you a type 1 or type 2 diabetes patient?  Share your story at CallingAllTypes.com in honor of World Diabetes Day.  For everyone else, “act now” by wearing blue, talking about type 2 diabetes prevention or simply taking a walk around your neighborhood.


What Patients Say About Janumet 50 1000

Posted June 11th, 2011 by

Janumet 50 1000 is the brand name (and dosage level) of sitagliptin-metformin, a combination prescription drug used in the management of type 2 diabetes.  (50 refers to 50 mg of sitagliptin while 1000 refers to 1000 mg of metformin.)  In addition to diet and exercise, Janumet 50 1000 is prescribed when the use of metformin or sitagliptin alone does not adequately control the condition.

At PatientsLikeMe, where more than 130,000 patients are sharing their experiences with conditions, symptoms, treatments and more, 21 patients report using Janumet 50 1000 or a lower daily dosage (50 mg sitagliptin / 500 mg metformin).  What can we learn from these patients’ experiences?  Quite a bit, actually, thanks to PatientsLikeMe’s unique data-sharing platform.

Looking at the three treatment evaluations submitted for Janumet, all three patients rate the effectiveness as “Moderate,” while side effects were marked as “Mild,” “Moderate” and “Severe,” respectively.  The chief complaint from the patient who reported “Severe” side effects was diarrhea.  However, she writes, “Blood sugars are going down.”

JOIN PATIENTSLIKEME TODAY

What about you?  Have you taken Janumet 50 1000 or a different dosage of this combination diabetes medication?  Join PatientsLikeMe and add your experiences to our growing body of knowledge.  Then, stay to exchange advice and support, research common treatments and learn from other patients like you.

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