Our Open Research Exchange (ORE) platform puts patients at the center of the clinical research process. It helps medical researchers pilot, deploy, share, and validate new ways to measure diseases within PatientsLikeMe’s community of more than 400,000 members.
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. In this editorial, we argue that a new social contract must be drawn up that respects the autonomy of patients as individuals while also maintaining scientific rigour.
By Francisco Grajales, David Clifford, Peter Loupos, Sally Okun, Samantha Quattrone, Melissa Simon, Paul Wicks, and Diedtra Henderson
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 a 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.
By Riley Bove, Elizabeth Secor, Brian C. Healy, Alexander Musallam, Timothy Vaughan, Bonnie I. Glanz, Emily Greeke, Howard L. Weiner, Tanuja Chitnis, Paul Wicks, Philip L. De Jager
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.
By Paul Wicks, Dorothy Keininger, Mike Massagli, Christine de la Loge, Catherine Brownstein, Jouko Isojarvi, James Heywood
We found a range of benefits for people with epilepsy using our site including improved understanding of their seizures, finding another patient like them, and learning more about symptoms or treatments. Before they came to PatientsLikeMe, 1 in 3 patients had never met another person with epilepsy. The more friends they had with epilepsy on the site, the more benefits they experienced.
By Paul Wicks, Timothy Vaughan, Michael Massagli & James Heywood
When a small Italian study reported that lithium carbonate had the potential to slow the progress of ALS, hundreds of users of our site started taking the drug under the supervision of their physicians. Although we were unable to replicate the promising findings, we hope that this study demonstrates the power of sharing data to advance science and medicine.
Benjamin Heywood was a speaker at The Genomes Environments Traits (GET) Conference in April of 2013. At this event, hosted for people working at the frontiers of human biology, Ben gave a presentation focused on open patient reported outcomes.
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.
Lift! is a European conference that brings together innovators in design, healthcare, and social architecture. Here, R&D Director Paul Wicks contrasts the popular culture representation of the future we were promised against the current state of healthcare, with particular reference to the "Web 2.0" world
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 last fall; click here to watch the video of his inspiring and insightful presentation to a global audience of scientists, industry leaders, and researchers.