Research at PatientsLikeMe

PatientsLikeMe Research

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.

Featured Research

5/8/13 12:28 pm EDT
PLOS ONE: Evaluation of an Online Platform for Multiple Sclerosis Research: Patient Description, Validation of Severity Scale, and Exploration of BMI Effects on Disease Course
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.
1/13/12 3:00 am EST
Epilepsy & Behavior: Perceived benefits of sharing health data between people with epilepsy on an online platform
In this survey of our users, our epilepsy community (sponsored by UCB) demonstrated significant perceived benefits (improved seizure knowledge, medication adherence, reduced ER visits), but also underscored significant need; prior to joining the site, a third of epilepsy patients had never met another epilepsy patient.
6/14/11 3:00 am EDT
Nature Biotechnology: Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm
Following the publication of a small Italian study that provocatively suggested the drug lithium could slow ALS, hundreds of patients started taking the drug. Using an innovative data collection system and matching algorithm,we refuted this study with a sample ten times larger than the original trial.

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Presentations

4/25/13 6:04 pm EDT
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.
3/7/13 6:09 pm EST
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...”
5/8/12 3:00 am EDT
Thriving Against Expectations
Last November, we attended tedxcambridge.com/thrive/" target="_blank">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?
10/5/11 3:00 am EDT
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.
9/8/11 3:00 am EDT
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.
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11/12/10 3:00 am EST
"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.
2/16/10 3:00 am EST
"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

6/26/09 3:00 am EDT
Google Scholar
PatientsLikeMe is frequently cited by other publications in fields as diverse as Law, Sociology, and Medicine.
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Paul Wicks, Ph.D.
Research & Development Director

Research Milestones

2013
- Robert Wood Johnson Foundation awards PatientsLikeMe a $1.9 million grant to create a real-time health learning system for the development of patient-centered health outcome measures. The award is announced by R&D Director Paul Wicks live on stage at TED.
2012
- PatientsLikeMe posts patient-reported data on four ALS treatments in trial on figshare.com
- PatientsLikeMe research team publishes paper in JMIR about the short-term dynamics of the Parkinson's Disease Rating Scale (PDRS), Mining Online Social Network Data for Biomedical Research
- PatientsLikeMe research team reports the first "dose effect curve for friendship" in Epilepsy and Behavior; demonstrates epilepsy patients who connect on PatientsLikeMe have better outcomes
more...
2011
- In Nature Biotechnology paper, PatientsLikeMe refutes 2008 PNAS paper on the efficacy of lithium carbonate on ALS; marks 1^st time a peer-to-peer network used to evaluate a treatment in real time and refute clinical trial
- PatientsLikeMe launches new feature for patients to accelerate clinical trial enrollment with data from ClinicalTrials.gov
- In Amyotrophic Lateral Sclerosis, PatientsLikeMe and Charite validate the ALS Functional Rating Scale (ALS-FRS) for web use
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2010
- In Journal of Medical Internet Research, PatientsLikeMe publishes results of user survey suggesting that members perceive a variety of benefits from using the site, including feeling better informed about their treatment decisions, better communication with their healthcare providers, and improved quality of life

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Disease Milestones

2013
- PatientsLikeMe research team studies weekly fluctuations in Parkinson’s patients and finds the disease more variable than once thought
2012
- PatientsLikeMe teams with TED Fellow Dr. Max Little to advance Parkinson’s research through his Parkinson's Voice Initiative
- PatientsLikeMe's MS and Fibromyalgia communities reach 30,000+ patients each
- The number of diseases and conditions grows to 1,500+ being shared on PatientsLikeMe
- PatientsLikeMe begins a new collaboration with Merck focused on understanding psoriasis
2011
- PatientsLikeMe partners with the nonprofit R.A.R.E Project (Global Genes) with the goal of finding and connecting 1 million rare disease patients
- PatientsLikeMe opens to all conditions; grows from 12 communities to 1,200 in just 12 months
- In Nature Biotechnology publication, PatientsLikeMe refutes 2008 PNAS paper on the efficacy of lithium carbonate on ALS; marks 1^st time a peer-to-peer network used to evaluate a treatment in real time and refute clinical trial
2010
- The company collaborates with Novartis to connect patients with organ transplants to learn about their challenges and solutions
- PatientsLikeMe partners with UCB to enable patients with epilepsy to record their seizures and learn from one another

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