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.
While agencies such as PCORI and the FDA are increasingly incorporating patients as partners and decision-makers in prioritizing and providing input to their work, the pharmaceutical sector lags significantly behind. In this comment from PatientsLikeMe and Novartis, the authors call for increased patient participation in earlier phases of drug development to guide innovation.
Using a cohort of 513 members of the PatientsLikeMe MS community, a team of researchers identified significant worsening of symptoms associated with menopause, particularly for those women who had undergone surgical menopause or were younger at the onset of menopause. Use of the MS Rating Scale, Revised (MSRS-R) helped to identify MS symptoms such as vision issues and arm function that do not overlap with symptoms of menopause.
In this discussion paper from the IOM’s Roundtable on Value & Science-Driven Healthcare, the authors explore how patients view their role in team-based care and explain what is needed to foster effective partnership of patients and health-care providers.
In his keynote address at the Drug Information Association's (DIA's) 50th annual meeting, Co-Founder and Chairman Jamie Heywood discussed how patients can become partners with industry. The company was also honored with the 2014 DIA President’s Award for Outstanding Achievement in World Health, an award Jamie accepted on behalf of PatientsLikeMe members and staff.
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