patient reported outcomes

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

Conditions, Research / By

Patient Network to Work with the National Quality Forum to Ensure Patients Drive Healthcare Value   CAMBRIDGE, MA., 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. A portion of the grant funds […]

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PatientsLikeMe Names 2015-2016 Team of Advisors, Sets Focus on Redefining Patient Partnerships

2 Comments / Patient Experiences / By

Cambridge, MA, October 19, 2015—PatientsLikeMe has named 14 members to its patient-only 2015–2016 Team of Advisors and challenged them to work through an issue that’s central to everyone in the healthcare system: how to redefine patient partnerships. The team will be focused on rethinking what it means for patients to be partners, and on establishing

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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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Subjects no more: what happens when trial participants realize they hold the power in clinical trials?

2 Comments / Patient Experiences / By

When I first became involved with online communities back in 2002, I moderated a small forum for patients with ALS/MND in the UK at King’s College Hospital to connect with one another, share tips and support, and to help our care center to serve them better. One area that remains controversial even to this day

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New Efforts Underway to Improve Care for Veterans

1 Comment / Epilepsy, Research / By

With financial support from UCB, the Department of Veterans Affairs and PatientsLikeMe will study patient-reported outcomes. CAMBRIDGE, Mass. — Jan 22, 2013 — Today, the U.S. Department of Veterans Affairs’ Epilepsy Centers of Excellence (ECoE), biopharmaceutical company UCB and health data-sharing website PatientsLikeMe announce a new study to better understand what factors improve health outcomes for veterans with

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PatientsLikeMe Researchers Score a Hat Trick

2 Comments / ALS, Mental Health, Multiple Sclerosis, Research / By

The term “hat trick” originated in 1858 after English cricketer HH Stephenson successfully bowled out three batsmen with consecutive bowls and he was presented with a hat to commemorate his feat. In June, PatientsLikeMe’s research team scored a hat trick of our own by publishing three new studies in scientific journals in just four days,

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The “Immense Benefits” of Online Health Reporting: An Interview with ALS Study Author Dr. Thomas Meyer

2 Comments / ALS, Research / By

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,

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A Day in the Life of PatientsLikeMe Research Scientist Timothy Vaughan

1 Comment / Multiple Sclerosis, Patient Experiences, Research / By

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,

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ALS Patients Reporting Their Health Status over the Internet Just as Reliable as a Clinician in a Hospital

2 Comments / ALS / By

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

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Scoring with ATEC on PatientsLikeMe: New Feature for Patients with Autism

1 Comment / Patient Experiences / By

When we expanded PatientsLikeMe from serving a couple dozen conditions to serving several hundred overnight, we realized very quickly that our work was only just beginning. Since that early morning in April, our members (and staff) have added a lot more data to the system, including core symptom groups and commonly prescribed treatment surveys for

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