Navigation Links
RWJF awards $1.9 million grant to PatientsLikeMe to create open research platform
Date:2/25/2013

February 25, 2013Long Beach, CAPatientsLikeMe has been awarded a $1.9 million grant from the Robert Wood Johnson Foundation (RWJF) to create the world's first open-participation research platform for the development of patient-centered health outcome measures. The platform is part of a new open-science initiative that puts patients at the center of clinical research process and will allow researchers to pilot, deploy, share, and validate new ways to measure diseases. An "idea worth spreading," the initiative will be spotlighted today in a presentation at TED2013 by Paul Wicks, Ph.D., PatientsLikeMe's Research Director and a new TED Fellow.

Health outcome measures are typically developed by clinicians and researchers, and collect information that meet their needs. Linked with the PatientsLikeMe patient network, the new platform will help researchers develop health outcome measures that better reflect patients' experiences with a disease, and assess health and quality of life in ways that matter to patients.

"This project is really exciting for us because it focuses on data that is developed by patients in the real world, where they spend most of their time, as opposed to controlled clinical settings," says Brian Quinn, team director of RWJF's Pioneer Portfolio, the team funding this project. "We believe it has the potential to help researchers better understand the course of disease and open up important paths for the development of new therapies. We're eager to see what medical revelations will emerge when researchers focus first on patients' needs and concerns, and openly collaborate with patients and each other."

PatientsLikeMe is an established network for patients who want to monitor their health, improve their outcomes, and contribute to medical research and discovery. Nearly 200,000 patients, representing more than 1,500 diseases, have created longitudinal records centered around their health outcomes.

Using the platform, researchers will quickly attract PatientsLikeMe members to their studies, track the progress of newly developed measurements, and export data for analysis. Patients will be able to offer their rapid feedback to ensure that measures are relevant to their experience of disease.

In this open-participation research initiative, access to the new platform will be free, and all instruments and items developed on the platform will be made openly available for free, unlimited use and further development with no commercial restrictions. PatientsLikeMe is also contributing the dozens of existing instruments they have developed. Charitable users will receive discounted access to data compiled by PatientsLikeMe for the initiative.

"Measurement is the basis of knowledge. For too long, there have been restrictions placed by copyright and weak and out-of-date tools to measure a patient's experience with disease," says Jamie Heywood, co-founder and chairman of PatientsLikeMe. "Patients, researchers, and clinicians working together to iterate and learn about the holistic journey of each condition and health itself is a critical step toward transforming care and discovery so that they truly serve the patient."

A beta version of the platform will be unveiled in the coming months.


'/>"/>

Contact: Lori Scanlon
lscanlon@patientslikeme.com
617-229-6643
PatientsLikeMe
Source:Eurekalert

Related medicine news :

1. NIH awards $20 million over 5 years to train next generation of global health researchers
2. AFAR announces the 2012 Hartford Centers of Excellence in Geriatric Medicine awards
3. Washingtons Life Sciences Discovery Fund awards commercialization grants
4. Awards celebrate clinical research that can improve health and alleviate suffering
5. Presidential Recognition Awards presented during the 2012 AIUM Annual Convention
6. Awards to 5 IU School of Medicine physicians address critical need for geriatricians
7. Biomedical researchers receive Hartwell Foundation awards
8. Lawson researcher receives 1 of first-ever Pfizer Psychiatry Research Awards
9. AGA announces prestigious awards recognition recipients
10. US Army internal medicine residents receive awards from American College of Physicians
11. Outstanding high school students receive awards to stimulate research interest in digestive diseases
Post Your Comments:
*Name:
*Comment:
*Email:
(Date:10/12/2017)... ... ... The American College of Medical Informatics (ACMI) will present the 2017 Morris ... of AMIA’s Annual Symposium in Washington, D.C. AMIA’s Annual Symposium is taking ... in the field of medical informatics, this prestigious award is presented to an individual ...
(Date:10/12/2017)... ... October 12, 2017 , ... Information about ... intend to develop to enable prevention of a major side effect of chemotherapy ... especially in pediatric patients. For cisplatin, hearing loss is FDA listed on-label as ...
(Date:10/12/2017)... ... October 12, 2017 , ... HMP , a ... of a 2017 Folio Magazine Eddie Digital Award for ‘Best B-to-B Healthcare Website.’ Winners ... October 11, 2017. , The annual award competition recognizes editorial and design excellence across ...
(Date:10/12/2017)... ... October 12, 2017 , ... On Saturday, October 21, ... relay – Miles by Moonlight to raise money for the American Heart Association Heart ... , Teams will work together to keep their treadmills moving for 5 hours. ...
(Date:10/12/2017)... ... October 12, 2017 , ... Health Literacy Innovations ... literacy software tool, and the Cancer Patient Education Network (CPEN), an independent professional ... announce a new strategic alliance. , As CPEN’s strategic partner, HLI will ...
Breaking Medicine News(10 mins):
(Date:9/22/2017)... , Sept. 22, 2017 AVACEN Medical (AVACEN) ... is now successfully helping those with the widespread pain ... Fibromyalgia diagnosed Amanda in Essex, England ... washing my hair, experiencing no sleep at all, tremendous ... spasm… I cannot recommend [the AVACEN 100] enough, how ...
(Date:9/18/2017)... , Sept. 18, 2017  PMD Healthcare of ... Pharmacy of Kalamazoo, Mich. , have ... service that expedites and streamlines patient and provider access ... 2.0, and wellness management services.  ... used to measure lung function for a variety of ...
(Date:9/12/2017)... NEW YORK , Sept. 12, 2017   EcoVadis , ... supply chains, has published the first annual edition of its Global CSR ... than 20,400 companies evaluated by EcoVadis, based on Scorecard Ratings that analyzed ... ... & Performance Index ...
Breaking Medicine Technology: