At PatientsLikeMe we’ve been collecting self-reported data about patients with ALS (PALS) since 2006 – over 5,000 PALS to be exact! ALS is a disease that causes muscle wasting in the arms, legs, head and chest, which leads to problems walking, eating, and even communicating. However, unlike a disease like diabetes where there’s a blood… Continue reading ALS Patients Reporting Their Health Status over the Internet Just as Reliable as a Clinician in a Hospital
Tag: patient-reported data
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