Publications & talks

Research Tools

Open Research Exchange (ORE)

Open Research Exchange (ORE)

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 200,000 members. More information and pilot user applications are available here.

Bibliography of PatientsLikeMe

Featured Research

Subjects No More: What Happens When Trial Participants Realize They Hold the Power?

Subjects No More: What Happens When Trial Participants Realize They Hold the Power? British Medical Journal

By Paul Wicks, Timothy Vaughan, and James Heywood

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.
Social Networking Sites and the Continuously Learning Health System

Social Networking Sites and the Continuously Learning Health System Institute of Medicine

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.
Evaluation of an Online Platform for Multiple Sclerosis Research: Patient Description, Validation of Severity Scale, and Exploration of BMI Effects on Disease Course

Evaluation of an Online Platform for Multiple Sclerosis Research: Patient Description, Validation of Severity Scale, and Exploration of BMI Effects on Disease Course PLOS ONE

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.

Perceived benefits of sharing health data between people with epilepsy on an online platform

Perceived benefits of sharing health data between people with epilepsy on an online platform Epilepsy & Behavior

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.

Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm

Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm Nature Biotechnology

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.

Presentations

Open Patient Reported Outcomes

Open Patient Reported Outcomes

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.

Innovative Solutions to Healthcare

Innovative Solutions to Healthcare

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...”

Thriving Against Expectations

Thriving Against Expectations

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?

Integrated Prospective Healthcare & Research

Integrated Prospective Healthcare & Research

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.

"Making Molehills Out of Mountains"

"Making Molehills Out of Mountains"

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.

"The Big Idea my Brother Inspired"

"The Big Idea my Brother Inspired"

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.

Publications that feature PatientsLikeMe

Google Scholar

Google Scholar

PatientsLikeMe is frequently cited by other publications in fields as diverse as Law, Sociology, and Medicine. See our current listing on Google Scholar.