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PatientsLikeMeOnCall: From Open Data to Actionable Data

3 Comments / Patient Experiences / By

Every Friday, PatientsLikeMe holds “Journal Club” in our Boston headquarters with a different guest speaker. Last week we were privileged to hear from Dave Hale, Project Manager for Pillbox, a National Library of Medicine (NLM) and Federal Drug Administration (FDA) patient safety initiative. And thanks to PatientsLikeMeOnCall’s new podcast series “It’s Friday – Let’s Journal […]

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Doctor viewing health data

Taking Control of Your Health Data and Why It Matters

Patient Experiences / By

While the healthcare industry has attempted a more patient-centric approach over the last 20 years, consumers today demand even more from companies, led in large part by the transformation of traditional retail consumer experiences, such as Amazon and Uber. As a result, better patient outcomes are starting to become expected rather than just wished or

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PatientsLikeMe at the White House: A new initiative to give patients more control of their health data

Patient Experiences / By

Last month, PatientsLikeMe’s Sally Okun, VP of Policy & Ethics, was invited to the White House to attend a small executive discussion. The topic? Making the electronic health record (EHRs) experience more patient-centric and accessible, and the importance of “healthcare data interoperability” — the idea that different electronic health record systems should work together in

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The OpenNotes movement: Your right to read your doctors’ notes

Patient Experiences / By

Have you ever seen your doctor’s clinical notes about you? (We’re not talking about your brief ‘after-visit summary,’ but the detailed notes the doctor or other healthcare provider writes later on.) PatientsLikeMe member Liz (thelizarmy) recently talked with us about OpenNotes, a movement to give patients easy access to their providers’ notes – like her 4,000+

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“The most important thing is to know you are not alone” — Member Vicki opens up about her TBI

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Vicki (Vickikayb) is an avid gardener, volunteers at a wildlife rehabilitation center and loves to cheer on the Kentucky Wildcats. She’s also been living with a traumatic brain injury (TBI) since 2004. In a recent interview, Vicki shared how she lives a full life in spite of her condition and how it’s inspired a new

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Open funding for open science to accelerate ALS research: An interview with Prize4Life CEO Shay Rishoni

2 Comments / ALS, Parkinson's Disease, Patient Experiences / By

Just about a year ago, we teamed up with Sage Bionetworks and TED Fellow Dr. Max Little for an ongoing Parkinson’s disease (PD) project called the Patient Voice Analysis (PVA).   The big idea: combine data from two sources – phone-based voice recordings and patient reported data from PatientsLikeMe’s Parkinson’s Disease Rating Scale (PDRS). Then,

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PatientsLikeMe invites patients to lead research projects on Open Research Exchange

Patient Experiences / By

New $2.4 Million Grant from the Robert Wood Johnson Foundation Supports Two Patient-Led Projects in 2014 to Develop, Test and Validate Patient-Reported Outcomes CAMBRIDGE, Mass.—March 27, 2014—Expanding on its mission to put patients at the center of clinical research, PatientsLikeMe today announced that patients can now apply to lead the development of new health outcome

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PatientsLikeMe launches “Data for Good” campaign to encourage health data sharing to advance medicine

Patient Experiences / By

Public Service Announcement-Style Video Calls Patients to “Donate Your Data for You. For Others. For Good” CAMBRIDGE, MA – March 10, 2014 – Today, PatientsLikeMe kicks off a new campaign promoting the value of sharing health information to advance research. In a series of public service announcement-style videos, the company highlights a movement called “data

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PatientsLikeMe and Sage Bionetworks launch open science study for people with Parkinson’s Disease

Conditions, Parkinson's Disease / By

Companies Partner With TED Fellow Dr. Max Little to Map the Severity of the Disease CAMBRIDGE, Mass.— February 5, 2014—PatientsLikeMe and the nonprofit research organization Sage Bionetworks announced today the launch of a new crowdsourced study to develop voice analysis tools that both researchers and people with Parkinson’s disease (PD) can use to track PD

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