This datacard uses the FDA Orphan Drugs Database to identify top players in the orphan space.
Entities include: Sponsors, diseases, and drugs
Purpose: business intelligence, market research, and business development.
Archives For bigdata
I think by now if you are living in or around Boston you have heard of the #IceBucketChallenge to #StrikeoutALS. The Ice Bucket Challenge was created to raise awareness for support of ALS and more specifically Pete Frates. Pete is a former Boston College baseball captain who is battling the disease. If you are nominated to complete the challenge, you must film yourself pouring a bucket of ice water on your head, after nominating others to complete the challenge within 24 hours. By now you have probably seen Pro Athletes, friends, family, and even politicians completing this challenge.
While watching Pete Frates’ video on his site, I learned what rewriting the end of ALS meant to him. “Rewriting the end of ALS means raising money to get better research for treatment and ultimately finding a cure.” So if you head over to karmadata, we can dig into the research part of ALS. You are able to see below that the number of Industry Sponsored ALS trials are declining. As Pete said, the way to a cure is through research. We need to raise the amount of research that is being done.
If you head over to Sponsor Finder and search for ALS Trials, you will see that there are only 8 companies actively conducting ALS clinical trials.
Lastly, this data card below shows government funding. John Hopkins University being the top organization who grants money to ALS.
So what does all this mean? This challenge is to create awareness for ALS and I believe it is working. When I log in to facebook, it’s the first thing I see and it fills my news feed from top to bottom. By creating awareness, we are able to become more knowledgable on ALS and more likely to donate to the cause, which will hopefully result in more research. With all of the visualizations on funding and number of companies/trials, you can see that ALS may not be something people are too aware of. The Challenge will definitely not cure anything right away, but it is a big step in the right direction!
A couple of us here at karmadata have already donated to ALS and completed the Ice Bucket Challenge, even our CEO Sean Power who completed it last night! We urge you to visit petefrates.com and donate! You can also check out the sweet Frate Train gear at petefrates.storenvy.com
| On Monday, June 16th we were all ears when it came to NPR’s Morning Edition. NPR’s Eric Whitney interviewed and featured karmadata on the segment Power to the Health Data Geeks, after karmadata won an award for myHealth.io at the 2014 Health Datapalooza. We were very excited about this feature, almost as excited as when a new data set is released. |
 NPR News |
Listen to full interview here:
[audio http://pd.npr.org/anon.npr-mp3/npr/me/2014/06/20140616_me_power_to_the_health_data_geeks.mp3 ]
The patient facing service created by karmadata wins an award for providing meaningful information to patients at the 2014 Health Datapalooza, a gathering of over 2,000 of the nation’s healthcare experts, which was held on Tuesday in Washington, D.C
WASHINGTON, June 5, 2014 /PRNewswire-iReach/ — karmadata (www.karmadata.com) today announced the launch of MyHealth.io, a website that provides patients in need of surgery the ability to find the best surgeon in their area based on each surgeon’s volume and the quality of his or her affiliated hospital. On Tuesday, myHealth.io received one of three financial awards from the Health Data Consortium at the 2014 Health Datapalooza, and the karmadata team had the honor of presenting MyHealth.io to over 2,000 healthcare data experts and patient advocates from around the country.
“myHealth.io is our opening salvo in creating free tools for patients, putting them in the driver’s seat for making informed decisions that impact their own healthcare,” said Sean Power, founder and CEO of karmadata. “Each year there are millions of surgeries performed in the U.S. and most patients have absolutely no way to comparison shop for their surgeon. Most surgical patients end up accepting a blind referral, typically from their primary care physician, without having access to important information.”
“The release of physician identifiable data from Medicare has changed all of that,” said Brendan Kelleher, Chief Data Scientist of karmadata. “We link surgical volumes by surgeon for each procedure to data on the surgeon’s hospital. This allows the patient to not only see which surgeon has performed the most procedures, but also specific quality ratings on the surgeon’s affiliated hospital drawn from patient surveys and quantitative performance metrics released each year by CMS. Now comparison shopping for a surgeon using important factors such as volume and quality is easy.”
“My job is to think about each patient’s experience on myHealth.io,” said Yesi Orihuela, Head of Design and UX of karmadata. “We built the site for healthcare consumers, not data or industry experts. Your journey on the site starts by entering your zip code. From there you are led step by step through a body map to find your surgery, a list of surgeons that perform it, and a map and data visualization that make it easy to identify and locate the surgeon that is best for you.”
About karmadata and MyHealth.io
karmadata is the world’s healthcare (big) data, simplified. Using big data and cloud technologies, karmadata is able to standardize and link the world’s healthcare data ranging from leading open data sources to private pharmacy and medical claims. karmadata created myHealth.io as a free service to patients to enable comparison shopping for surgical services and will expand to enable a broad range of healthcare consumer activities. Learn more by visiting www.karmadata.com, www.myhealth.io, or by following them on Twitter @karmadata @myhealthio
About the Health Data Consortium
Health Data Consortium is a collaboration among government, non-profit, and private sector organizations working to foster the availability and innovative use of data to improve health and health care. The Consortium advocates for health data liberation; promotes best practices and information sharing; and works with businesses, entrepreneurs, and academia to help them understand how to use health data to develop new products, services, apps, and research insights. Learn more at www.healthdataconsortium.org or @hdconsortium on Twitter.
karmadata 