PatientsLikeMe Research Publications and Presentations
Throughout the year, the work of our research and development (R&D) team is published in peer-reviewed scientific journals and/or presented at conferences. Here are some of the highlights.
2012 Publications
 |
Online assessment of ALS functional rating scale compares well to in-clinic evaluation: A prospective trial Amyotrophic Lateral Sclerosis By Thomas Meyer, Andre Maier, Teresa Holm, Paul Wicks, Laura Steinfurth, Peter Linke, Cristoph Munch, Robert Meyer Self-assessment of symptom progression in chronic diseases is of increasing importance in clinical research and patient management. In this study led by Charite Hospital in Berlin, on-site and online assessments were compared at baseline and after 3.5 months. Results showed that the correlation between on-site evaluation and online testing of the revised ALS Functional Rating Scale (ALSFRS-R) was highly significant. |
|
 |
Information wants to be free, but when it comes to clinical trials can we afford to let it be? Clinical Investigation By Paul Wicks (Editorial) “Information (or data) wants to be free” – so goes the mantra of hackers and data activists. In the past this meant computer geeks hacking into secure private networks to fulfill their own curiosity or liberate secret knowledge. Today, voluntary “data liberation,” as practiced by governments and corporations, is relatively commonplace and semiorganized groups with data freedom agendas, such as Wikileaks and Anonymous, have entered the mainstream consciousness. |
|
 |
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. |
2011 Publications
 |
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. |
|
 |
Patient-reported Outcomes as a Source of Evidence in Off-Label Prescribing Journal of Medical Internet Research By Jeana Frost, Sally Okun, Timothy Vaughan, James Heywood, Paul Wicks When a drug is approved by the FDA, it is for a specific purpose or “indication”. However, we noticed that many of our users said they had been prescribed drugs for purposes not included in the original approval, known as “off-label” usage. In this award-winning study, we sought to discover the experiences of patients taking two widely-used treatments for off-label purposes. |
|
 |
The Multiple Sclerosis Treatment Adherence Questionnaire (MS-TAQ) Journal of Medical Internet Research By Paul Wicks, Mike Massagli, Amit Kulkarni, Homa Dastani For MS patients, taking their disease-modifying treatments on time can make the difference in terms of relapses, progression, and long-term function. Using the voice of our patients we constructed a scale that measures all the barriers that get in the way of our patients being adherent to their drugs, in the hope of improving their outcomes. |
Presentations
 |
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. |
 |
Putting patients at the center of healthcare; disruption in medicine, research, business, and drug safety 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. |
Leave a Comment