The Value of Openness: The PatientsLikeMe Blog

(This post has been repurposed from an article written by PatientsLikeMe’s Ben Heywood for eyeforpharma’s Patient’s Week 2011.)

Real-world, patient-reported data is becoming more important to you, the patient, as well as everyone in healthcare. One source of that data is patient registries.

According to the US Department of Health & Human Services’ Agency for Healthcare Research and Quality (AHRQ), a patient registry is “a database of confidential patient information that can be analyzed to understand and compare the outcomes and safety of health care.” Ultimately, the goal of capturing and analyzing this data (shared by multiple sources like hospitals, pharmacies, physicians and patients) is to learn from one another and improve healthcare. Like registries, PatientsLikeMe understands the importance of capturing data in a meaningful, computable and quantifiable way.

However, behind every piece of data is a patient.

So, in the spirit of putting patients first, we began thinking about the next generation of a patient registry where you benefit in real-time from what you share. It would need to be a situation where you could openly share longitudinal demographic and clinical data about your disease while using online tools to improve your outcomes. It couldn’t be just silos of health data focused on one disease at a time; it would need to encompass data on all diseases and inspire you to share information about those co-morbidities too.

If this next generation of a “registry” could ensure long-term data sharing, can you imagine how much meaningful insight would be available for patients and industry alike? We could…and that’s what we’ve been building at PatientsLikeMe for the last five years. We’re excited about what that means for patients like you each day, as well as what it means for the future of medicine.

We know you believe in community—we’ve seen it in your one-for-all mindset where you can share what you experience and see the same for every other patient like you; a mindset where you expect us to then pass on those experiences to researchers, companies and others who want to learn together and improve healthcare. When we tell you how we make money (by sharing your de-identified data with our trusted partners), many of you have said, “Great. Share! Share! Share!”

We have no doubt that sharing is the essential ingredient in accelerating research, ensuring patient safety and making better treatments. As we look beyond the chat room and beyond the traditional patient registry, we see a world where patients like you are openly sharing meaningful, computable and quantifiable data with each other to make your lives better…and, in turn, making all of medicine that much better too.

Can you see it too?  Tell us your thoughts on what the ideal patient registry should include.

February 14^th is Valentine’s Day.  But it’s also National Donor Day.

Started in 1998 by the Saturn Corporation and United Auto Workers in cooperation with the US Department of Health and Human Services (HHS), this annual event is focused on five points of life:  organs, tissues, marrow, platelets and blood.  All of these can be donated to help save and/or improve the lives of others.

Here are a few numbers that help underscore the need:

• 112,945 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

Does your driver’s license indicate that you’re a donor?  If not, and you want to give others a second chance at life, sign up to be a donor today.  Worried you’re too old?  Don’t be.  The condition of your organs is more important than your age, and there are only a few absolute exclusions (such as HIV infection, active cancer and systemic infection).  So don’t rule yourself out when there’s a chance you could help.

Finally, there is a particular need for 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 for everyone.

Are you awaiting an organ transplant – or the recipient of one?  Join PatientsLikeMe to connect with others like you.  We have hundreds of transplant patients among our members, including those with (or awaiting) a heart transplant, kidney transplant, liver transplant, lung transplant and pancreas transplant. What’s it like to go through transplantation? Read our recent interview with kidney transplant recipient and type 1 diabetes patient Michael Burke.

February is AMD/Low Vision Awareness Month, sponsored by Prevent Blindness America.  Affecting part of the back of the eye called the macula, age-related macular degeneration (AMD) can cause the center area of your vision to become blurry or wavy.  It can also create a blind spot right in the center of your vision.

As the name implies, your risk for AMD increases as you age.  Affecting more than two million Americans, AMD is the leading cause of vision loss for Americans age 65 and older.  That’s why it’s critical that you get a dilated eye exam every 1-2 years, even if your vision seems perfectly fine.  Just like glaucoma, signs of AMD – such as a straight flagpole seeming slightly curved or wavy – may be easy to miss at the beginning.

The cause of AMD is unknown, but risk factors include age, race, smoking, family history, cardiovascular disease and hypertension.  Diet may also play a role according to the University of Illinois Eye and Ear Infirmary.  For example, high fat intake (from meats, margarine, dairy products and baked goods) is associated with an increased risk of AMD, while people who eat fish (high in omega-3 fatty acids) more than four times a week have a lower risk of AMD than those who consume it less than three times a month.

Think only seniors have macular degeneration?  The data at PatientLikeMe suggests that it’s not just something to think about in your sixties and older.  Of the 56 patients who report macular degeneration at PatientsLikeMe, 39 of them (approximately 65%) are under the age of 60.  What are they doing to prevent further vision loss?  Some of the commonly reported treatments include the prescription drug Avastin as well as dietary supplements such as Zinc and Vitamin E.  (Click each treatment name to see how our patients rate the effectiveness, side effects, cost and more.)

Don’t let life get wavy on you.  If you’re overdue, have you scheduled your next dilated eye exam?

We are!  Check out the PatientsLikeMe team members who donned red items (everything from ties to scarves to dresses) in support of National Wear Red Day.  Here’s to increasing awareness of heart disease – the number one killer of women – in 2012.

Stay tuned for more about cardiovascular health throughout February, which is Heart Month.  That means it’s time to not just draw and cut out heart shapes for your Valentine – but to think about the organ that pumps our blood and keeps us alive.

Did you know that heart disease kills more women than all cancers combined?  And that it’s largely preventable?

Now you do – and there’s something you can do about it.  Participate in National Wear Red Day® tomorrow, February 3, 2012.  Better yet, get your friends and co-workers to dig into their closets as well.  Together, you can make a vibrant, high-impact statement with your sea of red.

Another easy way to show your support is to “Like” the Go Red for Women page on Facebook.  Everyone who becomes a fan will receive a free red dress pin to wear every year for this important event.  Want to get inspired to do more?  Watch comedic actress Elizabeth Banks in the short film “Just a Little Heart Attack” below.

Learn more about the risks of heart disease in women here.  And if you’ve already been diagnosed with a cardiovascular condition – such as cardiomyopathy, coronary artery disease or valvular heart disease – don’t go it alone.  Join PatientsLikeMe to share and learn with others like you.

National Wear Red Day® is a registered trademark of the American Heart Association and the US Department of Health and Human Services (HHS).

Last November, we shared our takeaways from TEDx Cambridge, a one-day event featuring 30+ speakers and lots of Ideas Worth Spreading (TED’s mission).  The theme for this particular gathering was “Thrive.”  How can we as individuals – and communities – not just survive but thrive?

One of the speakers to take a crack at that question was PatientsLikeMe Co-Founder and President Ben Heywood, who talked about the story behind PatientsLikeMe.  In addition to sharing how it all began with his brother Stephen’s diagnosis with ALS, and what PatientsLikeMe is trying to do (“a revolution of openness”), Ben focused on how we can thrive as a company against big expectations – both external and internal.

Tune in to the video below to find out just that.  Congrats to Ben on an inspiring talk – not to mention his standing ovation!

Last week, PatientsLikeMe Co-Founder Jamie Heywood had the honor of speaking at the Personalized Medicine World Conference (PMWC), a two-day event held at the Computer History Museum in Silicon Valley.  His presentation was entitled “Patient Driven Convergence of Clinical Discovery and Care.”  In recognition of the conference’s venue as well as the role that technology plays in personalized medicine, we decided to share some of the “tweets” that Jamie’s talk generated on Twitter.

Ruby Gadelrab (@DivaBiotech) tweeted:  “James Heywood, PatientsLikeMe, starts presentation with very poignant picture of his brother suffering from ALS.”

Ron Ribitzky, MD (@RonRibitzkyMD) tweeted:  “James Heywood of PatientsLikeMe at PMWC: Industry develops systems that can impact if people live or die, but not giving it to them.”

Shirley Wu (@shwu) tweeted: “Heywood of PatientsLikeMe:  At events like this, I often see tech searching 4 problems, not well-defined problems searching 4 solutions.”

Ribozyme (@ribozyme) tweeted:  “JH PatientsLikeMe:  If they (were to) add genotype data it would be a huge phenotype-genotype correlation study.”

Daniel Kraft, MD (@daniel_kraft) tweeted:  “Talk from @PatientsLikeMe.  Reduced ER visits by 18%. ‘Predict the future so we can change it.’”

Are you part of the Twitterverse too?  Follow us @PatientsLikeMe today.  We’re just 25 people shy of reaching 5,000 followers!

Did you make a health-related New Year’s resolution?  And are you using technology—such as a smartphone app or website—to achieve your goal?  Create a short video about it, and you could win prizes ranging from $250 to $2,000 if your video is selected as one of the best!

Sponsored by the US Department of Health and Human Services (HHS) and conducted via Challenge.gov, the Healthy New Year Video Challenge invites you to create a compelling video (2 minutes or less) about a New Year’s resolution for improving your health or that of a loved one, and how you will use technology to achieve your resolution.

“In order to empower individuals to be more active partners in their health, they need access to their information and tools they can use,” said Farzad Mostashari, M.D., Sc.M., national coordinator for health information technology.  “We are excited to harness the creativity of ordinary Americans to help promote the positive impact of the myriad health information technology tools and services on health and health care.”

For PatientsLikeMe members, you’re already using technology (meaning, our online health community!) to monitor and improve your health.  Here are some sample resolutions involving PatientsLikeMe that might make for a great video submission:

• Enter my complete health data at PatientsLikeMe so that I can spot correlations and patterns on my profile charts.
• Find out what PatientsLikeMe members with the same condition(s) are doing about a symptom that’s frustrating me.
• Chart my daily moods using PatientsLikeMe’s InstantMe survey to see what factors are affecting my mental health.
• Add my Lab and Test results at PatientsLikeMe so that I – and others like me – can learn from them.

All video submissions are due on Friday, February 16th, at 5:00 p.m. EST, so start brainstorming.  The idea is to inspire, motivate and educate others in a unique way, as all winning videos will be featured at HeathIT.gov.  For more details and contest guidelines, visit the contest website.

New to Health 2.0? Join the 125,000+ others at PatientsLikeMe to find information and support from those just like you – and begin monitoring your health with a host of tools and measurements. Cheers to health and technology in 2012!

Each year in the US approximately 12,000 women are diagnosed with cervical cancer, and more than 4,000 lives are lost as a result. What makes this such a tragic statistic is the fact that cervical cancer can be prevented through vaccines and regular screenings in almost every case.  That’s the all-important message to spread during Cervical Health Awareness Month, which takes place every January.

How does a vaccine help prevent cervical cancer?  By blocking the Human Papillomavirus (HPV), a common infection that almost everyone who is sexually active will have at some point.  We now know that cervical cancer is caused by specific strains of HPV, and as a result, researchers have determined that you can help prevent this life-threatening form of cancer by working to prevent the preceding infection.

The three-part HPV vaccine (marketed under the brand names Cervarix and Gardisil) is available for women age 26 and younger.  If you’re within the eligible range and interested in learning more, talk to your doctor about the costs, details and scheduling of this vaccination, which takes place over the course of six months and is now covered by a majority of insurers.  What if you’re older than 26? You can stay vigilant by getting regular Pap exams (recommended from age 21 and up) and taking an HPV test when recommended. That way, you can catch any infections or signs of cancer early, and get treated promptly.

Beyond raising awareness about prevention, there’s also the importance of information and support for those affected.  Have you tested positive for HPV or been diagnosed with cervical cancer?  Connect with others like you – including our 48 members with HPV and 44 members with cervical cancer – at PatientsLikeMe today.

Let’s start with the basics:  do you even know where your thyroid is?

A small, butterfly-shaped gland located at the base of the neck (just below the Adam’s apple), the thyroid influences the function of the heart, brain, liver, kidneys and skin.  That’s why it’s so important to know if you have a thyroid problem – especially if you’re a woman.  Women are five times more likely than men to suffer from hypothyroidism, which occurs when the gland does not produce enough thyroid hormone for the body to function properly.  Hypothyroidism can cause weight gain, miscarriages, forgetfulness, irregular menstrual periods and numerous other symptoms.

January is Thyroid Awareness Month, which means it’s a good time to “check your neck.”  As many as 30 million Americans may have thyroid problems, but more than half of them remain undiagnosed.  To help combat this lack of awareness, two thyroid disease patient advocates – Mary Shomon and Katie Schwartz – have created a new campaign called “I Am the Face of Thyroid Disease.”  It features video messages and photos from around the world to “shine a spotlight on the diversity of thyroid patients and their practitioners, and help overcome the stigma and silence surrounding thyroid disease.”

This diversity can also be seen in PatientsLikeMe’s hypothyroidism community, where more than 2,200 patients (8% of whom are male) report the disease.  Some of the most commonly reported symptoms in our community include cold intolerance, dry skin and lethargy, while one of the top reported treatments is Levothyroxine (branded as Synthroid, Levoxyl, Levothroid and more), a synthetic form of the human hormone thyroxine.  190 patients with hypothyroidism have shared in-depth treatment evaluations of Levothyroxine, detailing their experiences with effectiveness, side effects, cost and more.  These evaluations also contain a wealth of tips and advice.

Here’s what one long-time Levothyroxine user writes on her evaluation:

“I have taken this for 31 years now. If you do need to take this, please pay attention how you feel. If you have symptoms such as dry skin and feeling tired all the time, it might be that you’re not getting enough of it. You might need to up the dosage.  If you have heart racing and you’re losing lots of weight, etc., it might be you’re getting too much. Don’t forget to get a yearly blood test to make sure your dosage level is correct.”

We also have a little over 100 patients (12% of whom are male) reporting hyperthyroidism, a less common form of thyroid disease that occurs when the thyroid gland produces too much thyroid hormone.   Some of the most commonly reported symptoms include heat intolerance, excessive sweating and palpitations.  Along with those who have other forms of thyroid disease – including Hashimoto Thyroiditis – more than 8,000 members belong to the Endocrine, Metabolism and Nutrition Forum, where they can discuss their thyroid experiences with others like them.

Think you might have a thyroid problem?  Perform your own “neck check” at home (to detect any bulges or enlargement in your thyroid gland) and/or see your doctor for a thyroid evaluation today.  A simple blood test called the TSH test can tell you whether your thyroid gland is functioning normally.  If you’ve already been diagnosed, gain wisdom from connecting with thousands of others like you at PatientsLikeMe.

Did you know that as much as 40% of your vision can be lost due to glaucoma – without  your notice?

That’s why they call glaucoma the “sneak thief of sight.”  There are no symptoms, and once your vision is lost, it’s permanent.  This is one of the urgent messages of National Glaucoma Awareness Month, which takes place every January.  (And for good reason - according to a National Eye Institute survey, only 8% of Americans are aware of the fact that glaucoma has no early symptoms.)

Over four million Americans have glaucoma, and given its stealth progression, approximately half of them don’t know it.  The leading cause of preventable blindness, glaucoma is more prevalent in African American and Latino populations.  For example, it is six to eight times more prevalent in African Americans than Caucasians.  People who are severely nearsighted, have diabetes or who have family members with glaucoma are also at higher risk.

While there is no cure for glaucoma, there are treatments (including medication and surgery) that can help slow or prevent vision loss.  That’s why it’s so important to have regular eye exams, especially if you are over 60.  The disease can strike at younger ages, though, as the data from our glaucoma community at PatientsLikeMe shows.  Of the 107 members reporting the disease, approximately 60% are between the ages of 40 and 59.

Haven’t been to the eye doctor in a while?  Make an appointment today for your peace of mind.

Please meet multiple sclerosis (MS) patient hotmama08, who led a PatientsLikeMeInMotion-sponsored team that included two four-legged advocates at Walk MS in Columbia, SC, on May 14, 2011.  We especially love how the team member to the right wore bright blue shoes to match her PatientsLikeMeInMotion t-shirt!

Congrats to hotmama08 and all of our PatientsLikeMeInMotion-sponsored teams for your efforts to raise funds and awareness for your health condition. We’re honored to support you every step of the way. For more PatientsLikeMeInMotion team photos, check out our growing Flickr slideshow.

Thinking about organizing a team for next spring?  Learn more about the PatientsLikeMeInMotion program today.

Today, December 1st, is World AIDS Day.  30 years after the first reports of AIDS in the United States, HIV – the virus that can lead to AIDS – is still a reality for 1.1 million Americans.  Complicating matters is that fact that one in every five people living with HIV in the United States is unaware that he or she is infected.

That’s why, despite increased awareness of HIV/AIDS, we still need to do more to ensure that every American who may be at risk gets tested. PatientsLikeMe is joining the AIDS.gov initiative in “Facing AIDS” today.  This social media campaign is an easy way to show your support of The National HIV/AIDS Strategy – and it’s inspired by the current trend of taking photos while holding a sign with a message written on it.  Are you ready to join the campaign too?

As the video above illustrates, here’s how it works:

1. Write. Download a sign and add a message about why you are “Facing AIDS.”
2. Snap. Take a photo holding your sign and upload it to the Facing AIDS Gallery.
3. Share. Use social media (Facebook, Twitter, your blog, etc.) to share your photo.

What else can you do?  Remind people that you can locate your local HIV testing site by texting your zip code to “KNOWIT” (566948) or using the HIV/AIDS Prevention and Service Provider Locator, which includes maps and directions.   Also, check out and share our video about how one member has faced HIV/AIDS for more than 25 years (it has 40,000+ views on YouTube so far!), and if you’re a PatientsLikeMe member, subscribe to AIDS.gov’s profile page for updates.

Only by facing AIDS can we prevent it.

Please meet Parkinson’s disease (PD) patient Judith, who led a PatientsLikeMeInMotion-sponsored team at the Parkinson’s Unity Walk in New York City last April.  Held annually in Central Park, this massive grassroots event donates 100% of funds raised to PD research.

Congrats to Judith and all of our PatientsLikeMeInMotion-sponsored teams for your efforts to raise funds and awareness for your condition. We’re honored to support you every step of the way.  For more PatientsLikeMeInMotion team photos, check out our Flickr gallery.

Thinking about organizing a team for next spring?  Learn more about the PatientsLikeMeInMotion program today.