12 posts from July, 2012

What’s in Your Health Record?

Posted July 30th, 2012 by

What's in Your Health Record?  Get the Full Contest Guidelines and Details Here.

If you’re living in an Internet-enabled household, chances are you have all or most of your banking information at your fingertips.  Can you say the same for your health information?  For many, these important records are locked away in filing cabinets or kept at your doctor’s offices.

Despite the fact that patients have a legal right to see and get copies of their medical records, the statistics on access are fairly surprising.

  • 41 percent of the public have never asked their doctor for copies of their records
  • 81 percent say they’ve never asked to receive their records electronically

That’s why the Department of Health and Human Service’s Office of the National Coordinator for Health Information Technology (ONC) is sponsoring the “What’s in Your Health Record?” Video Contest.  The goal is to encourage more patients to ask for copies of their health information and look at new ways to view and track it online.  Simply share your story on video (2 minutes or less) – including what you learned from taking a closer look at your records – and you could win one of several cash prizes ranging from $250 to $3,000!  All submissions are due by August 20, 2012.

Did You Know You Have the Legal Right to See and Get Copies of Your Medical Records?

Maybe you’ll find a critical omission in your records, such as a medication allergy.  Maybe you’ll find something curious or unexpected that prompts you to ask questions at your next appointment or do research.  Or maybe you’ll simply confirm that you’re up to speed on your health status.  In any event, having your full health information on hand empowers you and also ensures that your loved ones have all the details they need to help you receive the best care possible.

Ask for your records today and see what you find!  And if you’re a PatientsLikeMe member, don’t forget that you can input and monitor hundreds of different lab results – from cholesterol to Vitamin D to PSA levels – on your profile.


Know Your ABC’s on World Hepatitis Day

Posted July 27th, 2012 by

Did you know that both hepatitis B and hepatitis C can be transmitted through blood-to-blood contact – but hepatitis B is commonly transmitted through unprotected sex as well?  Also, there is a vaccine available for only one of these forms of hepatitis.  Do you know which one it is? (Answer: hepatitis B)

Because these “silent” infections may not cause symptoms for years, hepatitis B and C are the focus of World Hepatitis Day, which takes place tomorrow, July 28th, and is sponsored by the World Health Organization (WHO) and the World Hepatitis Alliance (WHA). (There is another form of this viral infection called hepatitis A, which is typically transmitted through contaminated food or drinking water.)

World Hepatitis Day 2012

The reasons for greater awareness are stark:  the WHO estimates that two billion people have been infected with the hepatitis B virus and approximately 240 million people are living with chronic liver infections. Approximately 600,000 people will die every year from the consequences of hepatitis B.  In addition, there are around 150 million people chronically infected with hepatitis C worldwide, and more than 350,000 die each year from related liver diseases, according to the WHO.

Despite these alarming figures, hepatitis remains poorly understood, and the majority of those infected are unaware.  Should their infections become chronic, people living with either hepatitis B or C are at risk for serious liver complications, including liver cirrhosis and liver cancer.  In some cases, a liver transplant may be required.

You can learn firsthand about these conditions and their complications from our hepatitis patients at PatientsLikeMe.  As of today, 88 patients report hepatitis B, while 299 patients report hepatitis C.  In addition, 522 patients have undergone a liver transplant to replace a diseased liver.

If you haven’t been tested for hepatitis – or you want to know more about the hepatitis B vaccination – talk to your doctor at your next visit.  If you’re living with chronic hepatitis, we invite you to join our supportive community today.


What Is Big Data?

Posted July 25th, 2012 by

Can Big Data Put Patients on Top?

Big data” is being discussed in the media quite a bit these days.  But what exactly is it?

Generally speaking, it’s a data set that’s extremely large and complex, thus requiring advanced technology to turn it into meaningful insights.  Yet there’s a good reason to try to collect and interpret it.  Simply put, big data can reveal correlations and trends that you couldn’t spot otherwise.  As a result, it has the potential to greatly enhance our understanding of disease, crime, traffic, economics and more.

At PatientsLikeMe, where more than 200,000 members are sharing data on their symptoms, treatments and conditions, we’re a perfect example of big data in action.  That’s why our team is constantly working on developing the tools needed for you and fellow members to learn from the data that you’re all sharing about your condition(s).  Ultimately, our goal is to empower you with the real-world knowledge and big data needed to make informed decisions and achieve the best health outcomes possible.

Want to learn more about the big data movement?  Check out this roundup of recent articles discussing how big data is poised to transform the health care industry:

Big Changes Are Ahead for the Health Care Industry, Courtesy of Big Data
Fast Company, June 18, 2012

Big Data Can Save Health Care—But at What Cost to Privacy?
The Atlantic Weekly, May 25, 2012

The Health Care Industry Turns to Big Data
BusinessWeek, May 17, 2012

Health Care Is Next Frontier for Big Data
Wall Street Journal, January 19, 2012

What do you think about the excitement surrounding big data?


Marcia Hirst: Don’t Let Multiple Sclerosis Take the Joy Out of Your Life

Posted July 23rd, 2012 by

“The benefit of sharing on PatientsLikeMe is the support.  For me, it doesn’t matter what I’m going through, there are people there that understand.  They’re not judgmental.  They get it.  They’re there too.  I get lots of emotional moral support.”

Multiple Sclerosis Patient Marcia

Back in June, we shared with you a video interview with PatientsLikeMe member Lissa that was conducted by our partner Patient Power.  Today, we’re pleased to present a second Patient Power interview with another member, Marcia Hirst.  A wife and mother of 11 children, Marcia, 52, has been living with multiple sclerosis (MS) since she was a young girl – although she didn’t know it at the time.

Check out her moving interview below to find out about the lifelong adjustments she’s made due to MS and learn why “the puzzle pieces are coming together” now that she’s discovered a community of 28,000+ MS patients at PatientsLikeMe.

Marcia Hirst: Don’t Let Multiple Sclerosis Take The Joy Out of Your Life from Patient Power® on Vimeo.

Powered by Patient Power

Enjoying these Patient Power interviews?  Stay tuned for others as the series continues.


Join Us Next Week at the Bubbly Bub & Grub

Posted July 20th, 2012 by

Are you a Boston-area Ruby programmer or Ruby on Rails developer?  An open source software enthusiast?  Or someone who just likes to hang out with the techie folks?

PatientsLikeMe is a proud sponsor of the Boston Ruby Group’s upcoming social event, the cheekily named Bubbly Bub & Grub at a Pub in the Hub Club, which takes place Tuesday, July 24th, at 6:30 p.m.  If the name alone doesn’t get you there, how about the chance to schmooze, eat and drink with “the finest Rubyists this side of the Mississippi”?

Click Here to RSVP for the Bubbly Bub & Grub

The Boston Ruby Group is known for their regular presentation nights (one or two 45-minute presentations, lightning talks and announcements) and project nights (where programmers get together and write code). This particular event, however, is all about meeting people and having fun.  Anyone, whether a “Rubyist” or not, is welcome.

If you’re in the Boston area, come by, say hello and pick up some PatientsLikeMe swag.  Other sponsors who will be handing out goodies and addressing the crowd include ZipCar, Terrible Labs, Iora Health, DockYard and thoughtbot.


PatientsLikeMe in the News: A Roundup

Posted July 18th, 2012 by

Check out some of the media outlets that have highlighted health social networks recently – including PatientsLikeMe and our members.

Social Media a Godsend for Patients with Rare Diseases
PatientsLikeMe is highlighted as a good example in this Chicago Tribune article.

Medical Innovation Needs Silicon Valley Speed, Stat
Fast Company cites us for providing “unprecedented levels of feedback on side effects.”

PatientsLikeMe in the News.  Photo courtesy www.stockfreeimages.com.

How Social Networks Enable Patients to Be More Involved in Their Healthcare
PatientsLikeMe is “at the heart of this shift,” according to this Guardian (UK) article.

Telemedicine Tackles Mental Health Treatment
Our InstantMe survey of how you’re feeling is called out in this Information Week piece.

Match.coms of Clinical Trials Make It Easier to Connect Patients, Researchers
We’re spotlighted as one of the “matchmaking” services that could expedite research.

To see more PatientsLikeMe media coverage, visit our Press page.   To read other articles about Health 2.0 and join the discussion, follow this Twitter hashtag.


Bridging Traditional Medicine and Online Health

Posted July 16th, 2012 by

“The reason I’m interested in Doctors 2.0 is that it’s the intersection between those traditional healthcare establishments and the new cutting edge of the Internet, and I think the people who can bridge those two areas over the next two to three years will be the ones who will be able to empower patients and make a difference on a large scale.”

Paul Wicks, PhD, PatientsLikeMe R&D Director

In June, our R&D Director Dr. Paul Wicks attended the third annual Doctors 2.0 and You conference, an international gathering devoted to the understanding of how physicians are using new technologies, web 2.0 tools and social media.  During the event, which was held in Paris, France, he was asked to give a brief video interview about why he was attending and what he’s been up to lately.  Check it out below.

On a related note, check out our interview with pediatrician Dr. Jim King about how he’s used PatientsLikeMe as part of his practice.


Navigating Healthcare on Twitter

Posted July 13th, 2012 by

More than five years after founder Jack Dorsey sent the very first “Tweet,” Twitter has exploded into a social media behemoth.  Today, billions of real-time Tweets are sent each year about all manner of subjects – including healthcare.  But how in the world do you keep up with all of them?

That’s exactly the conundrum that the Healthcare Hashtag Project set out to tackle.  By creating a database of relevant hashtags to follow, they aim to “lower the learning curve of Twitter” and make it “more accessible for providers and the healthcare community as a whole.”  Ultimately, they hope this will help those interested in healthcare “find the conversations that are of interest and importance.”

Screenshot_8_27_13_5_14_PM

To dip your toes into this geyser of information, check out the project’s up-to-date lists of healthcare hashtags (a topic categorization that begins with “#”), Tweet chats (where a group of people Tweet back and forth at a designated time), conferences and diseases.  Not only can you discover where the interesting conversations are taking place, but you can find out who to follow within your disease area and see what’s happening at related healthcare and scientific conferences.

Oh, and don’t forget that PatientsLikeMe is on Twitter too.  Follow us today!


PatientsLikeMe Researchers Score a Hat Trick

Posted July 11th, 2012 by

The term “hat trick” originated in 1858 after English cricketer HH Stephenson successfully bowled out three batsmen with consecutive bowls and he was presented with a hat to commemorate his feat. In June, PatientsLikeMe’s research team scored a hat trick of our own by publishing three new studies in scientific journals in just four days, bringing our total number of published studies to 27.

An Image from the Third Published Study in Our June Hat Trick:  "Mining Social Network Data for Biomedical Research"

As employees at a start-up company, we all wear many hats – literally, as you can see from the photos below, and figuratively, in terms of our responsibilities as scientists, product developers and business people across different disease areas. For instance, in this trio of papers, we address research issues in multiple sclerosis (MS), ALS and mood disorders. Click on the study titles below to read the full papers and a big thank you to all of our patients for sharing your voices and making this research possible.

Monday, June 18th – First PatientsLikeMe study published.

The multiple sclerosis rating scale, revised (MSRS-R): Development, refinement, and psychometric validation using an online community

Members of our MS community will be familiar with the MS Rating Scale (MSRS), which is their primary outcome measure. We developed it a few years ago to address an unmet need for a brief, easy-to-use rating tool that covered more areas than simply walking. In collaboration with a neurologist, we sketched out our first version of the MSRS, which has now been used over 90,000 times by our 28,000+ MS members to share your progress, track your relapses and disability, and gain insight into how your treatments are working.

PatientsLikeMe Research Scientist Dr. Tim Vaughan

Published in the Journal of Medical Internet Research, this new study describes work to improve the MSRS to a revised version (the MSRS-R) and establish that the instrument measures what it is supposed to measure (reliability), that it correlates well with other instruments (concurrent validity) and that it allows differences between groups of patients (sensitivity to change). This process of “validating” a patient-reported outcome (PRO) is an important step in increasing the value of the data that we produce for researchers. Studies are underway right now to continue improving the instrument and compare it to doctors’ ratings of patient disability.

As with all outcome measures we develop at PatientsLikeMe, we have licensed the MSRS-R for anyone to use freely in their own research studies. This work also serves as a foundation for our resident predictive modeler and particle physicist Dr. Tim Vaughan to begin work on predicting the course of an individual patient’s disease using your MSRS scores!

Tuesday, June 19th – Second PatientsLikeMe study published.

E-mental health: A medium reaches maturity

PatientsLikeMe Research & Development Director Dr. Paul Wicks

The Internet has transformed many aspects of healthcare in the past decade, and to open a special issue on “E-Mental Health” in the Journal of Mental Health, our R&D Director Dr. Paul Wicks was commissioned to write a special editorial.

Available by clicking the link above, the paper describes the progress of online systems for people with mental health issues, from government-provided resources (such as this UK NHS Choices site about self-harm) to commercial, computerized cognitive-behavioral therapy programs like “Beating the Blues” and collaborations between different sectors of the health system. For instance, in the UK if you Google “suicide” there is a special message from the Samaritans mental health support service right at the top of the page.

At PatientsLikeMe, our vibrant mood community has been active since 2008, and our published research has shown that it provides improved outcomes to many of our members.

Thursday, June 21st – Third PatientsLikeMe study published.  Hat trick completed.

Mining Online Social Network Data for Biomedical Research: A Comparison of Clinicians’ and Patients’ Perceptions About Amyotrophic Lateral Sclerosis Treatments

As you probably know, the story of PatientsLikeMe starts with ALS and trying to find treatments that can improve the symptoms, including anxiety, stiffness, or constipation. Back in 2003, ALS nurse Dallas Forshew and Dr. Mark Bromberg published a small study describing massive variation in the way ALS doctors from 39 specialist centers treat the symptoms of ALS. This data was also described in our 2010 TEDx Berkshires talk about the value of crowd-sourced data.

PatientsLikeMe Research Assistant/Software Engineer Shivani Bhargava

In this new study published in the Journal of Medical Internet Research, we collaborated with researchers at the University of Utah to compare the passively collected ALS patient data from our system with what the clinicians said. Although they agreed in most areas, there were split opinions too, particularly when it came to the perceived level of efficacy that these treatments had. Click the link above to read more.

This paper is also notable for being our own Shivani Bhargava’s very first scientific publication! Shivani started with us as an intern, then became a research assistant, and has recently made a career change to start studying as a software engineer. A true renaissance woman!


The Importance of Open Access: An Interview with Patient Advocate Graham Steel

Posted July 9th, 2012 by

A native of Glasgow, Scotland, Graham Steel is a longtime “Guest Researcher Member” of PatientsLikeMe.  Following the death of his brother Richard at the age of 33 from a rare condition known as variant Creutzfeldt-Jakob Disease (vCJD), Graham became involved in patient advocacy work, and most recently, in lobbying for open access to published scientific research.  Find out how this active blogger and Tweeter developed a passion for data sharing in our interview below.

Patient Advocate and Open Access Supporter Graham Steel

1.  Tell us how you first got involved in patient advocacy work.

As per my PatientsLikeMe profile, this started in 2001. Two years after the loss of my only sibling to vCJD, I was approached by a UK organization called the Human BSE Foundation to act as their Vice-Chair. Quite a daunting task for a 33-year-old!! I was involved in that capacity until 2005. Over the years, my interests in science and information sharing to this day continue to diversify.

I’m a great believer in complete openness and transparency as anyone who knows me in real life or via the Internet knows. One of my key assets seems to be “connecting people,” something that I started doing at the age of four. I enjoy making new connections and this is made so much easier with the advent of the web.

2.  You’ve been a member of PatientsLikeMe since 2007.  What key changes have you seen the site go through in that time?

I am not 100% sure where I first found out about PatientsLikeMe but it was most probably via the main ALS TDI Forum. I’m not a “regular” PatientsLikeMe forum poster with only 197 posts since February 2007. Some key changes that spring to mind: the addition of a PatientsLikeMe blog was a great development. A couple of years ago, a “Share This” button was added to the blog making it much, much easier to share content via social networking sites, etc.

The PatientsLikeMe platform itself has expanded in many ways since 2007. At that time, if I recall correctly, ALS/MND was the only disease covered. Now, that has increased to >1,200 conditions, so that alone is a major development. New features get rolled out on a regular basis and they are accompanied with good and clear explanations. It’s also much easier to ‘drill down’ to/for specific content, and the site is generally simpler to navigate than back in 2007, IMHO.

The Logo for the Open Access Movement

3.  You have recently campaigned for open access publishing. Why is this important to patients?

Yes, as of late 2006, I stumbled upon my first Open Access (OA) Manuscript, as it happened via Public Library of Science Pathogens. Up until that point, I had assumed that ALL Scientific, Technical & Medical (STM) content was locked up behind paywalls. As such, it was very enlightening to discover an alternative to traditional publishing. As matters stand though, only ~15% of Peer Reviewed STM Manuscripts are OA, and subscription-based publishing is still “the norm.” The reason that I became part of the OA Community was to use my networking skills to make more people aware of and involved in OA. OA itself however is just one cog (but a significant one) in the wheel of Open Science!!

“Why is OA important to patients?” Where does one start?! One of the best recent responses to that question comes from PatientsLikeMe’s very own Dr. Paul Wicks with his guest post over at the Public Library of Science Blogs dated June 14th, 2012, and entitled “Open Access Is Not For Scientists. It’s For Patients.”

Two key sections of that post that stood out for myself most were:

“In the past six years, we’ve found that more and more patients are trying to access research studies written about them, including studies where they were participants. In addition, they are increasingly capable of understanding them. Yet closed access is locking them out of better understanding their conditions and their choices.”

And…

“As a society, we need to recognize that our understanding of disease doesn’t belong to science. It belongs to the patients (who are also usually our funders, by the way), and we should exist only to serve them.”

4.  What do you see as being critical for the future of patient advocacy?

The Internet, Open Data and The Semantic Web. In terms of the sharing of data from patients, PatientsLikeMe was the first platform (that I am aware of) that made it easy for patients to share their data online with others. Whilst this data is “open,” it is open to the PatientsLikeMe community (and selected others) but not open at large. As stated in June this year by Sir Paul Nurse, “the President of the Royal Society said there was a need to put safeguards in place to protect confidentiality.” Sir Paul said that in reality no data was “totally secure” and that doctors already relied on personal information for treatment. “If you want a complete guarantee of privacy you would have to diagnose and treat yourself,” he said. (Also, see the recent “Science as an open enterprise” report by The Royal Society).

John Wilbanks Speaking at TED Global.  Photo Credit:  James Duncan Davidson.

In terms of the semantic web and link data, entities such as http://linkeddata.org/ and http://www.linkeddatatools.com/ have a lot of potential in terms of what we can do in a linked up world. Also in June, in his talk at TED Global entitled “Unreasonable People Unite,” John Wilbanks made a number of interesting points. From the TED Blog:

“Wilbanks’ proposal is a medical commons, a way for people to gather this medical data and share it freely. People are neurotic about privacy and keeping control of their data. ‘Some of us like to share as control.’ And, he believes we live in an age where people agree with him. He mentions a study run at Vanderbilt University in Tennessee. ‘It’s not the most science-positive state in America,’ he says. ‘Only 5% wanted out. People like to share if given the opportunity and choice.’ And not using this data to understand health issues through mathematical analysis ‘is like having a giant set of power tools but leaving them not plugged in while using hand saws.’”


Today’s Photo: Walking Warriors for MS

Posted July 5th, 2012 by

As we get deeper into summer, there are disease-related walk/run events happening almost every weekend.  What they all share is an opportunity for patients, friends and family to come together in solidarity and raise money for research and patient services.

For inspiration, please meet multiple sclerosis (MS) patient barneyhouse and her “Walking Warriors,” who took part in a recent Walk MS event in Ormond Springs, Florida.  By signing up for our PatientsLikeMeInMotion program, the team was able to score bright blue PatientsLikeMe t-shirts and a monetary donation towards their fundraising goal. “My sister, who is six years older, has had MS for over 30 years,” writes barneyhouse.  “So although this is new for me, it is not new to me.”

PatientsLikeMe member barneyhouse and her "Walking Warriors" team

Congrats to the Walking Warriors team as well as all of our PatientsLikeMeInMotion-sponsored groups for your efforts to raise funds and awareness for your condition. We’re honored to support you in your journey.  For more PatientsLikeMeInMotion team photos, check out our growing Flickr collection.

Thinking about organizing a team for this summer or fall?  Learn more about the PatientsLikeMeInMotion program today.


What We’re Reading at PatientsLikeMe

Posted July 2nd, 2012 by

Here are some of the media items that grabbed our attention recently.

What Air Traffic Can Teach Us About Kidney Transplants
Air traffic rules balance fairness and efficiency. Can organ waitlists do the same?

Open Access Is Not for Scientists.  It’s for Patients.
A guest blog post by our R&D Director, Paul Wicks, for the Public Library of Science.

What We're Reading at PatientsLikeMe

Snake Oil?  Scientific Evidence for Health Supplements
A very cool health data visualization from Information Is Beautiful.

Facebook Urges Readers to Add Organ Donor Status
Are you going to add your organ donor status?

Glenn Close:  Let’s End the Stigma Around Mental Illness
A great look at how we discuss mental illness – and the impact our words can have.

What are you reading?  Share your recommendations in the comments section.