2 posts tagged “eyeforpharma”

Behind Every Piece of Data Is a Patient

Posted February 17th, 2012 by

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

PatientsLikeMe Co-Founder and President Ben Heywood

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.

PatientsLikeMe member bheywood


Submit Your Best “App” Ideas to Help Teen Cancer Patients

Posted December 7th, 2011 by

“Young cancer patients have a lot to say as well as questions to ask, but struggle to find quality information sources where they can express this.  It is even harder to find an innovative platform to visit. I believe a mobile app created exclusively for teenage cancer patients would make their quest for information not just desirable, but also entertaining. As such, the possibilities of this competition are really exciting.”

– Sarunas Narbutas, 23, patient living with Chronic Myelogenous Leukemia

Learn More About the Mobile Health CompetitionAlong with several other sponsors that include eyeforpharma, Teenage Cancer Trust and LIVESTRONG Young Adult Alliance, PatientsLikeMe is a proud sponsor of the Mobile Health Competition, which encourages anyone and everyone – including advertising agencies, pharmaceutical employees and cancer patients themselves – to submit their ideas for a mobile application (“app”) that could improve the lives of teenage cancer patients.

Should your idea be selected as the winner by a “Global Superpanel” of teenage cancer survivors, you will receive publicity in major news channels and $5,000 to donate to the cancer charity of your choice.  In addition, you will have the chance to see your idea turned into reality by one of eyeforpharma’s partners, and you will be invited to speak about your idea at the eyeforpharma Oncology Conference in Philadelphia.

Ready to start the brainstorming process? The deadline for submitting your idea to the Mobile Health Competition is January 10, 2012, and you can find all the details about how to enter as well as helpful resources and inspiration here.