How serious is the U.S. Department of Health and Human Services’ Office of the National Coordinator for Health Information Technology (ONC) about increasing patient safety?   So serious that they are running a contest challenging the best and brightest developers to create a platform that makes it easier to report a patient safety event electronically.

The Reporting Patient Safety Events Challenge is offering $70,000 worth of prizes, with $50,000 (and a demo opportunity) awarded to the first place winner, $15,000 to the second place winner and $5,000 to third place winner.  The submission deadline is August 31, 2012.  Learn more about the contest guidelines and 30+ participating developer teams here.

“Ideally, we would live in a world of optimal care delivery,” says the ONC.  “Physicians, nurses and care delivery organizations across the country are continuously working to minimize and eliminate errors.  But, until this ideal world exists, we need to invest in infrastructure that helps enable better care quality, risk management and shared learning – all to ensure better care for patients.”

PatientsLikeMe fully supports this goal, which is why we introduced our first-of-its-kind adverse event reporting platform in 2009.  As part of a two-year pilot program, our members with multiple sclerosis (MS) were able to submit adverse events related to a medication, medical product or medical device directly to the U.S. Food and Drug Administration’s MedWatch program through PatientsLikeMe.  Our system automatically pulled relevant data from the patient’s profile into a FDA 3500 form, dramatically reducing completion time.

Since then, we’ve also developed an integrated and comprehensive drug safety reporting platform that monitors patient data for potential adverse events when we are collaborating with a sponsoring partner in designated disease areas. These data are then clinically triaged and curated using the Medical Dictionary for Regulatory Activities (MedDRA), an industry standard terminology. Adverse events are submitted to our partners electronically in FDA 3500A format to meet regulatory timelines and reporting criteria.  Of note, PatientsLikeMe is the only online health data platform in social media that has successfully passed multiple drug safety audits conducted by our partners’ pharmacovigilance and drug safety experts.

What’s the difference between patient safety and drug safety?  And what do we see ahead in this critical area of healthcare?  Tune in to a podcast with PatientsLikeMe Chairman and Co-Founder Jamie Heywood on this very topic.

Welcome to the fourth installment of our new PatientsLikeMeOnCall podcast series entitled “It’s Friday – Let’s Journal Club.”

This week’s interview is with PatientsLikeMe’s own Catherine Brownstein, PhD, MPH, who recently won a highly competitive award from the International Congress of Human Genetics (ICHG). One of our in-house Research Scientists, Dr. Brownstein captivated PatientsLikeMe headquarters last Friday with her Journal Club talk about what the ICHG award means as well as how the study of genetics can influence healthcare decisions.

Afterwards, PatientsLikeMe’s Aaron Fleishman sat down with Dr. Brownstein to learn more about how the ICHG award is selected as well as how it spotlights PatientsLikeMe’s potential as a platform for genetic discovery. Listen in below to hear what Dr. Brownstein had to say about how your genetics can affect your condition – from how you metabolize drugs to how your disease will progress.

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.

Last Friday we kicked off our new weekly podcast series called “It’s Friday – Let’s Journal Club.” Thanks to everyone who tuned in. This week’s guest interview is with Dr. Kevin Dykstra, PhD, who is President and CEO of qPharmetra, a pharmacometric consulting company. Dr. Dykstra stopped by PatientsLikeMe headquarters to talk to our team about the use of modeling and simulation to aid drug development.

After this insightful “Journal Club” session, PatientsLikeMe’s Aaron Fleishman sat down with Dr. Dykstra to learn more about how his team is working to measure the clinical utility of treatments in a systematic, quantitative way. Listen in to hear what exactly that involves and why Dr. Dykstra feels PatientsLikeMe is a “treasure trove of information” that is “incredibly useful” for both patients and drug developers

Recently, PatientsLikeMe Chief Marketing Officer David S. Williams III had the opportunity to participate in a podcast interview with the industry magazine PharmaVOICE. Along with Bonnie Brescia, a Founding Principal of BBK Worldwide, he fielded questions about how the new alliance between our two companies can both enhance and expedite the clinical trial recruitment process. Listen in to hear what each had to say about what this partnership means and what we hope to achieve together.

“I think we can see there are a lot of ways where openness can be powerful.  What’s necessary is to help facilitate openness and reduce the barriers to sharing medical information.” – Ben Heywood

PatientsLikeMe Co-Founder Ben Heywood has blogged previously about openness and sharing – and how important they are for patients. In this edition of PatientsLikeMeOnCall, he talks about the progress we’ve made in achieving openness within the healthcare industry and his vision for the expansion of the patient voice.

How can we put patients back at the center of healthcare? What barriers do we need to break through so that patients like you can openly share your health information?  Ben answers these questions and more in the fourth and final episode of our “A Look Ahead” podcast series.

Tune in to Ben’s full interview here:

Did you miss any of the first three episodes?  Find them on our blog or iTunes page.

“What are the things that affect a patient’s safety? It’s everything – it’s not just whether the drug is good or bad, it’s the whole process.” –Jamie Heywood

Why does the healthcare industry need to shift from drug safety to patient safety? PatientsLikeMe Co-Founder and Chairman Jamie Heywood explains his view in this week’s edition of our podcast series entitled “A Look Ahead.”

No stranger to this topic, Jamie has written about patient safety on our blog before.  ”By using structured data collection tools within the PatientsLikeMe platform, overseen by a drug safety professional, industry partners can improve patient safety,” he wrote.

In this edition of PatientsLikeMeOnCall^TM, Jamie discusses the difference between drug safety and patient safety, why it is so important for the healthcare system to adapt more to patient safety and what this shift would mean for the future of healthcare.  He also makes the case for why pharmaceutical manufacturers need to follow up on any drug safety events when a new treatment has been developed.

To hear more, listen to Jamie’s full interview:

“Social media is the canvas on which patients can really paint the entire picture of the experience they’re having with their disease and how it impacts their lives.” - David Williams

Why is it so important for patients and industry to work together?  Chief Marketing Officer and Head of Business Development David Williams tells us just that in this week’s installment of “A Look Ahead.”  We sat down to discuss the benefits of aligning patient and industry interests as well as the role that social media can play.

Among other win-win results, David shared that this alignment of interests can produce:

• Faster development of treatments and services
• Products that impact a patient’s quality of life, not just clinical outcomes
• Greater patient influence and input on industry decisions

We also talked about how social media has become a key method of interaction, allowing pharmaceutical and other healthcare companies to better understand the functional impact of a disease on everything from mental productivity to the ability to stay employed.  Patients like you discuss issues like these online every day, and if the industry is paying attention, it can lead to richer data and improved services.

What successes has PatientsLikeMe had in bringing patients and industry together?  And what kind of possibilities do we see ahead?  Tune in to David’s full interview here:

Thanks for stopping by and listening to the second podcast in the “A Look Ahead” series. Next Friday, April 1, 2011, we will be talking with Co-Founder and Chairman Jamie Heywood about the transition from drug safety to patient safety. See you then!

Since 2006, PatientsLikeMe has made great strides in medical research for patients. Of course, all of the research that we do is made possible because of you, our members, and your willingness to openly share your health information, including your treatments, symptoms and outcomes.

PatientsLikeMe-led research has been published in at least six different scientific journals, including the Journal of Medical Internet Research and the Journal of Neurology, Neurosurgery, and Psychiatry. (See our Research page for a full list.) And, if you look us up on Google Scholar, you’ll see that PatientsLikeMe has been cited by others in more than 900 published scientific articles. We’re proud to have made such a noteworthy impact on medical research in five short years.

So what’s next? What can we achieve now that our patient members number more than 97,000? Well, that’s what this podcast episode is all about! Our Director of Research and Development Paul Wicks PhD stopped by PatientsLikeMeOnCall™ to discuss the future of PatientsLikeMe research, some of the challenges we face and the powerful influence patients like you can have when you share your health data.

Tune in to hear Paul’s thoughts here:

Thanks for stopping by and listening to the first podcast in this new series. Next Friday, March 25, 2011, we will be talking with our head of marketing and business development, David S. Williams III, about the importance of patients and industry working together. See you then!

PatientsLikeMeOnCall™  is proud to present a new podcast series called “A Look Ahead.”  Through these dynamic podcasts, we will be diving into the major shifts PatientsLikeMe sees ahead for patients, patient care and patient/industry collaboration.

At the end of 2010, PatientsLikeMeOnCall released an episode called “The Patient Rules.” In this group podcast, we sat down with Co-Founders Ben and Jamie Heywood, Chief Marketing Officer David S. Williams III and R&D Director Paul Wicks PhD to discuss how far patients like you have come in sharing health information and driving the healthcare process.

In this new four-part series, we will again be talking to each of them about the future of the healthcare industry. What changes are ahead in 2011? And what role will you play? To get you geared up for this series, here is a quick preview clip from my interview with David Williams about the importance of patients and industry working together.

The series premiere for “A Look Ahead” launches this Friday, March 18, 2011, with an interview with Paul Wicks. Look for the other interviews to run every Friday for the next three weeks.  To tune in, subscribe to the series on our iTunes page or listen to any of our podcasts on our PodBean page.

We recently sat down with our executive team here at PatientsLikeMe in our first-ever roundtable-format podcast.  In this PatientsLikeMeOnCall^TM interview, we ask Co-founders Ben and Jamie Heywood, Chief Marketing Officer David S. Williams III, and R&D Director Paul Wicks PhD to discuss why our recent series themes are so important to the history and future of PatientsLikeMe.

Blog Series Themes:

1. “Share and Compare” – where you learned more about how and why patients like you are sharing their health information to put their experiences in context.
2. “One for All” – including visualizations on how one member of a community can be the catalyst for a universe of unparalleled dialogue and support.

While discussing how patients can continue to drive the health care process, they also help us preview this week’s discussion called “Treat Us Right.”

Treat Us Right
In this series, we focus on how you can see if your treatment is right, just by the information shared by patients like you; and how important your shared information is to research efforts – both for academia and industry to learn how they can help each of you make good choices about your treatments.  We’ve heard you tell industry to “Treat Us Right” and we will talk more about it this week.

We kick off “Treat Us Right” week tomorrow with Research Scientist Catherine Brownstein, MPH, PhD describing why it’s critical to compare the PatientsLikeMe communities with the general population of the diseases to begin to assess the validity of treatment outcomes reported on the site.  Stay tuned.

Want to follow our blog?  Check out the sidebar to the right to sign up for a RSS Feed, email reminders or to follow us on Twitter and Facebook.  (And don’t forget to “Share This” any time you see content you like).

“I’ve had Parkinson’s for 15 years, and I feel like I can help people more by being vocal than I can by being quiet.” -Aunti J

Stand up and shout! Episode four of our new podcast series, “The Patient Voice,” is here!  For our next interviewee, meet Aunti J.  Like many others who contributed to the quilt, Aunti J wasfeatured in her local newspaper. She was proud to be raising awareness of Parkinson’s disease (PD) on behalf of all those represented through their patches on the PatientsLikeMe PD community quilt.

Aunti J inherited her PD and has been living with it for most of her adult life.  While she has plenty of first-hand experiences with PD, she has also been a caregiver for someone with the disease – her father.  A wealth of knowledge with a big heart, Aunti J makes it a point to share as much as she can about what she has learned. When her father passed away, she came online looking for support and an opportunity to share with others.  The PatientsLikeMe PD community is thrilled that she found us!

With more than 200 patients with inherited PD on PatientsLikeMe, Aunti J was able to find patients just like her.  In fact, she tells a compelling story about how she also found others who were experiencing compulsive disorder as a side effect of their PD and describes feeling as if a weight had been lifted off of her shoulders.

Here is Aunti J’s story on PatientsLikeMeOnCall^TM.

“I’ve met a lot of people from all over the world,
we are all one happy family.” – Vigwig

Around and around we go, strap on in for Episode 3 of our podcast series, “The Patient Voice.”   To continue with the PatientsLikeMe Parkinson’s Disease (PD) quilt story, our guest today is community member VigWig. A few years back, VigWig underwent surgery for DBS (Deep Brain Stimulation). As word spread throughout the community, Vigwig’s online friends arranged for the quilt to be there waiting for him when he returned to his room from surgery.

Inspired by his Parkinson’s “family” (as he calls them), VigWig plays a more active role in the PatientsLikeMe PD community, and in raising awareness about PD. His story was published in the The Courier of Montgomery County, and VigWig submitted quilt patches to Parkinson’s Quilt Project (coordinated by the Parkinson’s Disease Foundation and displayed at the World Parkinson’s Congress). An honest-to-goodness story about an online “family” rallying together to support one of their own…here is our interview with VigWig.

“When I saw the quilt, I was like, ‘Oh my gosh! It’s beautiful!’…I felt like I was visiting with all of these other people.” – BrownCat87

Wrap yourself up with the PatientsLikeMe Parkinson’s Disease quilt and Episode 2 of “The Patient Voice” podcast series. In our first episode, we heard from PokieToo, creator of the PatientsLikeMe Parkinson’s Disease quilt, and learned about how it all got started.

Today’s guest is BrownCat87, an active member of the PD community who contributed to the quilt.  In this podcast, BrownCat87 shares about everything from her experiences with depression to how DBS has helped her manage her condition to how this quilt made her feel like she was a part of something special.  Listen in!