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
Category: Research
The Future of the Personal Genome
“If you want to understand health, you have to understand what it means to be sick, at phenomic and molecular levels, so you can correct it in a holistic and effective way.” – Jamie Heywood In February, PatientsLikeMe Co-Founder and Chairman Jamie Heywood was invited to participate in a “Innovation Series” panel sponsored by the… Continue reading The Future of the Personal Genome
A Day in the Life of Biz Dev Team Member Arianne Graham
What’s it like to work at PatientsLikeMe? We are continuing to reveal just that with our monthly blog series “A Day in the Life,” which features employees from different departments. So far, we’ve interviewed User Experience Engineer Cris Necochea, Research Assistant Shivani Bhargava, Office Manager Alison Dutton and Research Scientist Timothy Vaughan. Today we hear from Arianne… Continue reading A Day in the Life of Biz Dev Team Member Arianne Graham
The “Immense Benefits” of Online Health Reporting: An Interview with ALS Study Author Dr. Thomas Meyer
Earlier this month, we told you about a new study showing that ALS patients reporting their health status over the Internet (using a rating scale known as the ALSFRS-R) is just as reliable as a trained nurse rating the patient’s score. Now, we’d like to share our interview with lead study author Dr. Thomas Meyer,… Continue reading The “Immense Benefits” of Online Health Reporting: An Interview with ALS Study Author Dr. Thomas Meyer
A Day in the Life of PatientsLikeMe Research Scientist Timothy Vaughan
What’s it like to work at PatientsLikeMe? We are continuing to reveal just that with our monthly blog series “A Day in the Life,” which features employees from different departments. So far, we’ve interviewed User Experience Engineer Cris Necochea, Research Assistant Shivani Bhargava and Office Manager Alison Dutton. Today we hear from Research Scientist Timothy Vaughan,… Continue reading A Day in the Life of PatientsLikeMe Research Scientist Timothy Vaughan
Information Wants to Be Free
(This post has been repurposed from an article written by PatientsLikeMe’s Paul Wicks for the scientific journal Clinical Investigation.) But when it comes to clinical trials, can we afford to let it be? “Information (or data) wants to be free” – so goes the mantra of hackers and data activists. In the past this meant… Continue reading Information Wants to Be Free
Behind Every Piece of Data Is a Patient
(This post has been repurposed from an article written by PatientsLikeMe’s Ben Heywood for eyeforpharma’s Patient’s Week 2011.) 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… Continue reading Behind Every Piece of Data Is a Patient
A Day in the Life of Research Assistant Shivani Bhargava
What’s it like to work at PatientsLikeMe? We are continuing to reveal just that with our monthly blog series “A Day in the Life,” which features various employees from different departments. So far, we have profiled Research Scientist Mike Massagli and User Experience Engineer Cris Necochea, and today, we share our interview with Research Assistant Shivani… Continue reading A Day in the Life of Research Assistant Shivani Bhargava
NFL Player Steve Gleason’s Inspiring ALS Story
Did you catch the pre-game show before Sunday’s Super Bowl XLVI? If not, you missed a beautiful NBC piece about Steve Gleason, who spent seven seasons as a safety with the New Orleans Saints. Diagnosed with ALS a year ago, Gleason now walks with a cane, and his speech has been impacted. The new father… Continue reading NFL Player Steve Gleason’s Inspiring ALS Story
New Quality of Life Index and More for Psoriasis
Are you one of the roughly 700 patients with psoriasis at PatientsLikeMe? We’ve got some exciting new features just for you. At the end of 2011, we unveiled the Dermatology Life Quality Index (DLQI), a new 12-question survey that helps you measure how psoriasis affects your day-to-day life. Answer the questions regularly to produce a… Continue reading New Quality of Life Index and More for Psoriasis