Last month, the Patient Centered Outcomes Research Institute (PCORI) released a funding announcement entitled, “The National Patient-Centered Clinical Research Network: Patient-Powered Research Networks (PPRNs)—Phase One.” Through this solicitation, PCORI seeks to establish a set of Patient-Powered Research Networks (PPRNs) that complement PCORI efforts to establish a national infrastructure of Clinical Data Research Networks through a… Continue reading PatientsLikeMe RFP for PCORI Funding
Tag: Research
Free Up Research! On Our Way to 25,000 Signatures
Have you heard about the petition launched to the White House asking for all federally funded research to be freely accessible over the Internet? We’ve signed it and here’s why… Today, government-funded research (that’s research paid for with your tax dollars) is often something you can have access to in published scientific journals, but for a… Continue reading Free Up Research! On Our Way to 25,000 Signatures
Today’s Photo: Uniting for Parkinson’s
Please meet Parkinson’s disease (PD) patient Judith, who led a PatientsLikeMeInMotion-sponsored team at the Parkinson’s Unity Walk in New York City last April. Held annually in Central Park, this massive grassroots event donates 100% of funds raised to PD research. Congrats to Judith and all of our PatientsLikeMeInMotion-sponsored teams for your efforts to raise funds… Continue reading Today’s Photo: Uniting for Parkinson’s
One for All: A Cross View of Patient Sharing
With more than 82,000 patients on PatientsLikeMe, there’s a lot of information being shared with one another. Last month, we highlighted how your sharing affects the experience of many on our site (One For All series). Today, we continue that theme by taking a look at information being shared across all of our communities that… Continue reading One for All: A Cross View of Patient Sharing
Share and Compare: A PatientsLikeMe Year in Review (Part III – more R&D)
The research team is very proud of how our team has grown in 2010 and the impact we’ve made in the academic community. In 2010 alone, PatientsLikeMe and our work were mentioned in scientific literature more than 133 times. All of this is because of what you share with us. Yesterday, we highlighted some of… Continue reading Share and Compare: A PatientsLikeMe Year in Review (Part III – more R&D)
Share and Compare: A PatientsLikeMe Year in Review (Part II – R&D)
The PatientsLikeMe research and development (R&D) team is excited about what we can all share and learn in 2011. Here’s a look back at some of what patients like you shared with us, and what we then shared with the world, in 2010. The R&D team published and presented some unprecedented insights based on what… Continue reading Share and Compare: A PatientsLikeMe Year in Review (Part II – R&D)
Treat Us Right: Comparing our Community to the General Population
Our recent series entitled Share and Compare focused on how patients like you can better answer the question, “How do I put my experience in context?” The answer, in part, comes from how much information you share to help create that context of real-world patient experiences. Think of it this way – with every piece of information… Continue reading Treat Us Right: Comparing our Community to the General Population
Mental Health Awareness: What do you know about Mood Conditions?
In honor of this month’s Mental Illness Awareness Week, here’s a snapshot of what’s happening in our PatientsLikeMe Mood community. Launched in 2008, the community now has more than 18,000 patients. Below are some interesting facts about the community, so please read and share on! DID YOU ALSO KNOW… You can search for patients under… Continue reading Mental Health Awareness: What do you know about Mood Conditions?
Multiple Sclerosis: Sustaining Care, Seeking a Cure
Our research team here at PatientsLikeMe carries out world-class research in collaboration with academic centers, commercial partners (see “how we make money“), and to help answer questions from our patients. We share our findings with the world through this blog, peer-reviewed publications, and by attending academic conferences like the Consortium of Multiple Sclerosis Centers (CMSC)… Continue reading Multiple Sclerosis: Sustaining Care, Seeking a Cure
It’s Official: Sharing Health Data Improves Outcomes
(Listen here to the PatientsLikeMeOnCallTM podcast on this topic) Last week the PatientsLikeMe R&D team published a study entitled “Sharing Health Data for Better Outcomes on PatientsLikeMe” in the Journal of Medical Internet Research (JMIR), the leading open access peer-reviewed journal on health care in the Internet age. The study aimed to find out direct… Continue reading It’s Official: Sharing Health Data Improves Outcomes