PatientsLikeMe

See the following -

Big Pharma Opens New Chapter On Big Data Collaboration

Dan Munro | Forbes.com | April 8, 2014

In the course of one short week, no less than 3 different models have emerged for sharing big data in the pharmaceutical industry.  The highest profile of these ‒ called Project Data Sphere (PDS here) ‒ was announced earlier today with the official opening of an online resource to share clinical trial data for use in cancer research.

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canSAR and other Information Portals, Data, and Tools used in the fight against Cancer

canSAR is a new cancer database launched earlier this week by the U.K. Institute of Cancer Research. It contains 1.7 billion experimental results and utilizes artificial (AI) intelligence technology to discover the cancer treatments of the future. It is an integrated knowledge-base that brings together multidisciplinary data across biology, chemistry, pharmacology, structural biology, cellular networks and clinical annotations. The goal is to further improve cancer research and drug discovery by providing free access to the knowledgebase and associated resources by researchers from across different disciplines. There are a growing number of available cancer databases and information portals. Read More »

GAO Makes Appointments to Health Information Technology Advisory Committee

Press Release | Government Accountability Office (GAO) | August 3, 2017

Gene L. Dodaro, Comptroller General of the United States and head of the U.S. Government Accountability Office (GAO), today announced 15 appointments to the new Health Information Technology (HIT) Advisory Committee. It is extremely valuable to have a range of perspectives and expertise in helping the government address challenges related to health information technology, “It is extremely valuable to have a range of perspectives and expertise in helping the government address challenges related to health information technology,” Dodaro said...

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Health Tap: Intelligent Interface for Patients

Andy Oram | EMR & HIPAA | January 9, 2017

    allows patients to connect with doctors online, and additionally hosts an enormous repository of doctors’ answers to health questions. In addition to its sheer size and its unique combination of services, HealthTap is ahead of most other health care institutions in its use of data. I talked with founder and CEO Ron Gutman about a new service, Dr. AI, that triages the patient and guides her toward a treatment plan: online resources for small problems, doctors for major problems, and even a recommendation to head off to the emergency room when that is warranted. The service builds on the patient/doctor interactions HealthTap has offered over its six years of operation, but is fully automated...

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HHS CTO on the Power of Connection

A learning system for health is not a new concept. It is an ancient instinct to share our experiences and stories. But technology allows us to widen the network of people we can talk with, increase the velocity of those conversations, inject them with more source material, then archive and make them searchable. For patients and caregivers, building that system means connecting people who share a diagnosis so they can share insights with each other – and with researchers. For example, the FDA is now partnering with PatientsLikeMe to explore how patient-reported data can shed light on drug safety.

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Knight Prototype Fund: When Storytelling Meets Civic Action

Desiree Everts | Idea Lab | July 17, 2014

Sixteen winners of the Knight Prototype Fund are set to receive $35,000 to help bring their ideas even closer to fruition. The Knight Foundation on Wednesday announced the most recent winners of its fund, which looks to support early-stage media ideas in an effort to push them closer to a formal launch...

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More Data, Better Drugs: Genetech, PatientsLikeMe Ink Groundbreaking Research Pact

Ron Leuty | BiotechSF - San Francisco Business Times | April 7, 2014

Genentech Inc. will mine the deep online patient network of PatientsLikeMe to pinpoint ways of using patients' real experience with diseases and drugs for better research.  The five-year agreement is the first broad research collaboration between Cambridge, Mass.-based PatientsLikeMe and a drug company, but it also demonstrates how open-source research and social media are increasingly tapped by companies to get real-world insights into diseases and how patients respond to treatments.

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PatientsLikeMe releases free Clinical Trial Matching Tool for Patients' Use

Peter Mansell | Pharma Times | March 26, 2013

PatientsLikeMe, the US-based online platform for the exchange of health data, has gone global with the clinical-trial matching tool it launched in the network’s home market last year. Read More »

PCORI Challenge Awards $125K To These 8 Digital Tools That Connect Patients & Researchers

Deanna Pogorelc | MedCity News | June 4, 2013

A crowdfunding platform for research topics. A searchable database of patients looking to participate in research. These are two of the ideas that garnered prize money from The Patient-Centered Outcomes Research Institute as part of its patient-researcher “matching” challenge. Read More »

RWJF Awards Grant to PatientsLikeMe to Develop New Measures for Healthcare Performance

Press Release | PatientsLikeMe, Robert Wood Johnson Foundation, National Quality Forum | December 8, 2015

PatientsLikeMe has been awarded a $900,000 grant from the Robert Wood Johnson Foundation (RWJF) to help jumpstart changes that will amplify the patient voice in the measurement of healthcare performance. “We have an abundance of clinical measures, but we need to better incorporate the voice of the patient into performance measurement” A portion of the grant funds a collaboration between PatientsLikeMe and the National Quality Forum (NQF) to develop, test and facilitate the broader use of patient-reported outcome measures (PROMs) to assess patient-reported health status. 

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Sharing Is Caring: Social Network Allows Patients to Share Diagnoses and Test Results

Alexia Severson | Healthline.com | March 4, 2013

The open-source health network PatientsLikeMe can help medical researchers connect with patients.

Sharing private information in the cloud comes with obvious risks, but it can also offer many benefits, some of which are just now coming to fruition.

PatientsLikeMe, an online community founded in 2004, which allows patients to manage their conditions and connect with others who share similar experiences, is taking this concept a step further.

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Six Funders Working To Set Science Free

Tate Williams | Inside Philanthropy | December 3, 2014

Sharing information is easier than ever, but much scientific research remains maddeningly walled-off in publications charging thousands of dollars for access. Some prominent funders are part of a growing movement to make science more open...

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Social Medicine 2.0—Can You Use Crowdsourcing to Give Your Medical Device a Leg Up?

Nigel Syrotuck | MDDI | July 7, 2017

Online crowdsourcing communities are a game changer. These platforms allow anyone to appeal to the entire connected world for support or participation. They get many of us to participate—Kickstarter processed just shy of $500 million dollars in 2014. Most interesting, at least to me, are platforms for crowdsourcing information. These make up the next generation of online forums, ranging from chat forums to open source hardware development...

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The Blockchain Interview with Jason Goldwater

Mr HIStalk | HIStalk | April 3, 2017

There are three, initially, that it has the potential to solve. First is access to data. The way that systems have been set up in hospitals or large integrated physician networks is that the data will either reside in a centralized server or now the trend is to reside it in a cloud. That’s fine and that certainly has been effective, but you’re talking about a large consolidation of data in a centralized location. Blockchain is very different because it is what is known as distributed ledger technology...

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The Growing Trend Of Clinical Research Crowdsourcing

The trend of open collaboration has led to innovation across multiple industries. For decades, big pharma has been known as conservative and slow to change. Today however, there is a growing movement toward open access and crowdsourcing scientific information to accelerate research and development. Open-source platforms have let developers create multiple crowdsourcing applications, that are further enabling the crowdsourcing trend in the life sciences industry, as well.

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