Attended Medicine 2.0'11 (Stanford University, USA)
Attended Medicine 2.0'12 (Boston, USA)
Attended Medicine 2.0'13 (London, UK)
Medicine 2.0'09 (Toronto, Canada)
Patients Informing Practice: Post-Marketing Drug Data in PatientsLikeMe, an Patient-Centered Online Community (closing keynote - winner of the JMIR Medicine 2.0 Award 2009)
Background: Typically, evaluating a new use of an existing drug is either expensive and time consuming or anecdotal and unstructured. In some cases, researchers conduct clinical trials to test off-label uses. Yet in many situations where drugs are off-patent, or are only used by a small population, providers and patients must rely upon their own individual-level experience to inform clinical practice. In this work, we explore how a patient-centered online platform could supplement trials to c...
Medicine 2.0'12 (Boston, USA)
Innovations abound in the field of medicine 2.0 – everything from mobile health apps to social networks, online portals, device arrays, and provider systems. A frequently recurring challenge seems to be the ability to take pilots and single-disease projects to a broader audience, whether that is a new disease, a new population segment, or a different level of engagement that is required. PatientsLikeMe is an online data-sharing research platform founded in 2006 for patients with a single di...
Medicine 2.0'13 (London, UK)
In the United States the National Health Service (NHS) is contentious. Free healthcare at the point of delivery and universal access for all have been described as the United Kingdom’s “national religion” but approaches to evidence-based service provision and equality for all are derided by some US critics as “socialist healthcare rationing” and were even lambasted during the 2008 Presidential election as containing (quite imaginary) “Death Panels”. While the idea of cheaper hea...
Big Data Panel
The transition from paper-based to electronic health records has generated, and continues to generate, large quantities of data. The main uses of these data are to support the direct care of individual patients and to guide the management of healthcare systems for populations. The data also have considerable potential to fuel research, but this asset has scarcely been harnessed for patient and public benefit. Beyond the clinic, healthcare consumers worldwide are adopting mobile and web-bas...
Full Paper Publications
interactive Journal of Medical Research
Severe Loss of Appetite in Amyotrophic Lateral Sclerosis Patients: Online Self-Assessment Study
Feasibility of a Web-Based Survey of Hallucinations and Assessment of Visual Function in Patients With Parkinson’s Disease
Preferred Features of Oral Treatments and Predictors of Non-Adherence: Two Web-Based Choice Experiments in Multiple Sclerosis Patients
Journal of Medical Internet Research
Sharing Health Data for Better Outcomes on PatientsLikeMe
Patient-reported Outcomes as a Source of Evidence in Off-Label Prescribing: Analysis of Data From PatientsLikeMe
Use of an Online Community to Develop Patient-Reported Outcome Instruments: The Multiple Sclerosis Treatment Adherence Questionnaire (MS-TAQ)
Quantifying Short-Term Dynamics of Parkinson’s Disease Using Self-Reported Symptom Data From an Internet Social Network
Mining Online Social Network Data for Biomedical Research: A Comparison of Clinicians’ and Patients’ Perceptions About Amyotrophic Lateral Sclerosis Treatments
Exploring Concordance of Patient-Reported Information on PatientsLikeMe and Medical Claims Data at the Patient Level
Correction of: Exploring Concordance of Patient-Reported Information on PatientsLikeMe and Medical Claims Data at the Patient Level
Scaling PatientsLikeMe via a “Generalized Platform” for Members with Chronic Illness: Web-Based Survey Study of Benefits Arising
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