The real-time research platform that advances medicine
At its core, PatientsLikeMe is a clinical research platform that can provide real-world, real-time insight into thousands of diseases and conditions. Our research professionals have completed studies with real-world data that have helped refute and pre-empt traditional randomized clinical trials, modeled Parkinson’s Disease, validated epilepsy quality measures, shed new light on medication adherence in patients with multiple sclerosis (MS) and organ transplants, and added and validated patient reported outcomes in psoriasis, autism and MS research.
In this editorial, the PatientsLikeMe research team explores how online tools have the potential to affect the blinding of randomized controlled clinical trials. As patients have found it easier to connect online, so too have they started organizing online; they’ve begun sharing their data, and even attempting to run their own analyses as to whether the trials they are enrolled in might yield benefits before the study has concluded.
There have been rapid increases in the use of online social networking sites for sharing health experiences like disease diagnosis, treatments, or methods for coping with illness. This discussion paper by the Institute of Medicine cites the results of our PatientsLikeMe survey that revealed 92% of users agreed with sharing their health data with researchers and as many as 78% would let drug companies see the same information.
In partnership with the Partners Multiple Sclerosis Center at Brigham & Women’s Hospital we found that members of PatientsLikeMe were slightly younger and more likely to be female, but that the differences were very small. We also validated the MSRS-R as a patient-reported outcome against a neurological examination and observational testing.
Presenting at TEDxSpringfield, PatientsLikeMe's Rishi Bhalerao argues the path to innovation in healthcare begins with patients, because they're the ones who know best what it's like to live with a condition.
As the first nurse to present at TEDMED, PatientsLikeMe VP for Advocacy, Policy and Patient Safety, Sally Okun, calls out the shortfalls in the language of health and introduces the idea of a patient lexicon.
Jamie Heywood recently spoke about innovative solutions to healthcare at the 2013 Nuffield Trust Health Policy Summit in London. The conference is organized by the Nuffield Trust, an independent source of evidence-based research and policy analysis for improving health care in the UK. In his speech, Jamie called for a revolution in measurement. “We should measure the severity of each condition and its impact on the patient...”
Last November, we attended TEDx Cambridge, a one-day event featuring 30+ speakers and lots of Ideas Worth Spreading (TED’s mission). The theme for this particular gathering was “Thrive.” How can we as individuals – and communities – not just survive but thrive?
In September of 2011, Jamie Heywood spoke at the 10th Dialogue on Science at the Academia Engelberg Foundation on our modern understanding of personalized medicine from genetics through to phenotype, from mice to humans, and from Hippocrates to Google.
PatientsLikeMe R&D Director Paul Wicks, presenting at TEDx Berkshires, walks through the medical decision process faced by patients and clinicians trying to manage their illness in a world lacking in data.
PatientsLikeMe Chairman Jamie Heywood presented some experimental new features on the site at the prestigious TEDMED conference; click here to watch the video of his inspiring and insightful presentation to a global audience of scientists, industry leaders, and researchers.
A PROSPER consortium member, PatientsLikeMe works to improve safety reporting in all phases of drug development with patient-reported outcomes of adverse events
PatientsLikeMe selects four pilot researchers for the Open Research Exchange
A sleep survey among 5,256 PatientsLikeMe members reveals that compared to the general population, people living with chronic conditions are nine times more likely to be at risk of having insomnia, and that
In Nature Biotechnology paper, PatientsLikeMe refutes 2008 PNAS paper on the efficacy of lithium carbonate on ALS; marks 1st time a peer-to-peer network used to evaluate a treatment in real time and refute clinical trial
PatientsLikeMe launches new feature for patients to accelerate clinical trial enrollment with data from ClinicalTrials.gov
In Amyotrophic Lateral Sclerosis, PatientsLikeMe and Charite validate the ALS Functional Rating Scale (ALS-FRS) for web use
PatientsLikeMe partners with the nonprofit R.A.R.E Project (Global Genes) with the goal of finding and connecting 1 million rare disease patients
PatientsLikeMe opens to all conditions; grows from 12 communities to 1,200 in just 12 months
In Nature Biotechnology publication, PatientsLikeMe refutes 2008 PNAS paper on the efficacy of lithium carbonate on ALS; marks 1st time a peer-to-peer network used to evaluate a treatment in real time and refute clinical trial