Business Milestones 2017

    • We partner with Jun Wang's iCarbonX to apply next generation biological measures and machine learning, and accelerate a deeper understanding of the basis of human health and disease. 
    • More than 500,000 people use PatientsLikeMe to find new options for treatments, connect with others, and take action to improve their outcomes.

     

Business Milestones 2016

    • PatientsLikeMe expands the scope of patient-generated information it offers through Walgreens.com to help more people better understand how certain prescription medications may affect them.

    • PatientsLikeMe makes key additions to the leadership team: industry insider Monique Levy, research scientist and public policy expert Marni Hall, and marketing executive Joy Morel.

    • More than 400,000 members now use PatientsLikeMe to connect with others, learn about disease, and track their health.
    • We announce a collaboration with M2Gen to give patients and researchers a more complete picture of patients’ experiences with cancer treatments and to shed new light on the factors that may affect outcomes and quality of life.
    • In the first-ever ALS virtual trial, PatientsLikeMe and The Duke ALS Clinic evaluate the potential of Lunasin, a soy peptide, to reverse symptoms in ALS patients.

Research Milestones 2016

    • PatientsLikeMe adds research scientist and public policy expert Marni Hall to the leadership team
    • PatientsLikeMe and Helsinn Therapeutics (U.S.) Inc. unveil findings from an online survey capturing weight loss experiences in non-small cell lung cancer (NSCLC) patients
    • We announce a collaboration with M2Gen to give patients and researchers a more complete picture of patients’ experiences with cancer treatments and to shed new light on the factors that may affect outcomes and quality of life.
    • In the first-ever ALS virtual trial, PatientsLikeMe and The Duke ALS Clinic evaluate the potential of Lunasin, a soy peptide, to reverse symptoms in ALS patients.

Notable News 2016

    • PatientsLikeMe co-founders Jamie and Ben Heywood were awarded the prestigious 2016 Humanitarian Award by the International Alliance of ALS/MND Associations. The Humanitarian Award is awarded to those whose work is of international significance for people affected by ALS/MND.
    • Nature features PatientsLikeMe and a PatientsLikeMe member in a piece focused on precision medicine
    • The Wall Street Journal features PatientsLikeMe’s virtual trial with Duke ALS Clinic

Disease Milestones 2016

    • We announce a collaboration with M2Gen to give patients and researchers a more complete picture of patients’ experiences with cancer treatments and to shed new light on the factors that may affect outcomes and quality of life.
    • In the first-ever ALS virtual trial, PatientsLikeMe and The Duke ALS Clinic evaluate the potential of Lunasin, a soy peptide, to reverse symptoms in ALS patients.

Business Milestones 2015

    • A new RWJF grant funds our work with the National Quality Forum to develop new measures for healthcare performance
    • We name 14 members to our 2015-2016 Team of Advisors, and ask them to help redefine patient partnerships
    • We sign an unprecedented collaboration with the FDA to explore how patient-reported data can give new insights into drug safety. 
    • We sign a collaboration with Partners HealthCare to improve patient outcomes.
    • Renowned computational biologist and information science strategist Jason Johnson joins as EVP and Head of R&D
    • Ed Godber joins as EVP of Life Sciences Ventures, to bring the patient agenda to the forefront of our partners’ development and delivery operations.
    • We announce a global research collaboration with AstraZeneca.
    • The company will use our patient-reported data to shape future medicine development and help improve outcome
    • We partner with Walgreens to add information about patient experiences with medications to the pharmacy website
    • Our members number more than 300,000, representing 2,300+ conditions

Research Milestones 2015

    • A study published in Neurology shows that small, temporary plateaus and reversals are more common in ALS than we thought, and should not necessarily be interpreted as an ALS treatment effect.
    • We partner with The American College of Cardiology to bring patient focus to diabetes research and care
    • An extensive study published in the Sleep Medicine Journal shows that sleep issues are much more prevalent across chronic diseases than have been broadly understood, and that compared to just 9% of the general US population, 78% of patients with chronic conditions were at risk for insomnia
    • The PatientsLikeMe Team of Advisors, a patient only advisory team, creates and publishes the 'Best Practices Guide for Researchers,' which outlines steps for how researchers can meaningfully partner with patients.
    • Our study on medical marijuana reveals that patients with certain conditions believe it is the best available treatment for them, with fewer side effects than other options and few risks
    • We sign an unprecedented collaboration with the FDA to explore how patient-reported data can give new insights into drug safety.
    • An article in Clinical Researcher magazine by PatientsLikeMe and partner Genentech discusses how engaging patients will change clinical trials for the better 
    • Our study with Biogen, which used a wearable device to monitor walking activity in people with MS, is featured in BusinessWeek and at the annual conference of the American Academy of Neurology

Notable News 2015

    • Co-founder and Chairman Jamie Heywood is named to Scientific American’s Worldview 100, a list of the most influential people in biotechnology today
    • The Wall Street Journal features PatientsLikeMe member Tam's work to create a new measure for pain
    • Associated Press television runs a feature story on member Garth Callaghan, the Napkin Notes Dad
    • Our study with Biogen, which used a wearable device to monitor walking activity in people with MS, is featured in BusinessWeek

Disease Milestones 2015

    • A study published in Neurology shows that small, temporary plateaus and reversals are more common in ALS than we thought, and should not necessarily be interpreted as an ALS treatment effect.
    • Our study with Biogen, which used a wearable device to monitor walking activity in people with MS, is featured in BusinessWeek and at the annual conference of the American Academy of Neurology.

Business Milestones 2014

    • On December 16, we celebrate the 10th anniversary of our founding
    • The data for good campaign kicks into high gear with a special Giving Tuesday promotion featuring Napkin Notes Dad Garth Callaghan
    • We join forces with The Schwartz Center to better understand patients’ perceptions of and create new measures for compassionate care
    • Our first-ever, patient-led Team of Advisors is creating new standards to help all researchers understand how to better engage with patients  
    • New services for pharmaceutical companies are launched that help them collaborate with patients on the design of clinical trials and other research
    • Our British Medical Journal editorial discusses what happens when trial participants realize they hold the power
    • PatientsLikeMe signs first broad research collaboration with Genentech to develop innovative ways of researching patients' real world experiences; initial focus on cancer
    • More than 250,000 patients are now on PatientsLikeMe

Research Milestones 2014

    • The Open Research Exchange platform helps nearly 20 researchers design new health measures
    • We partner with The Center for Assessment Technology and Continuous Health (CATCH) to unlock the potential of academic discoveries and bring integrated phenomics to the process of early discovery
    • Results from a survey of PatientsLikeMe members indicate an overwhelming majority (93%) of respondents would be willing to help researchers design better clinical trials
    • A survey published by members of an IOM collaborative shows that 94% of adult social media users with health conditions would be willing to share their health data to help doctors improve care
    • PatientsLikeMe signs first broad research collaboration with Genentech to develop innovative ways of researching patients' real world experiences; initial focus on cancer
    • Patients can now lead research projects on the Open Research Exchange
    • Data for good campaign encourages health data sharing to advance medicine 
    • Survey shows vast majority of people with health conditions are willing to share their health data

Notable News 2014

    • TIME Magazine and US News & World Report feature PatientsLikeMe's data for good campaign
    • The DIA presents PatientsLikeMe with the 2014 President's Award for Outstanding Achievement in World Health
    • BIONICLY names Jamie and Ben Heywood to its 2014 list of 15 influencers shaping digital health

Disease Milestones 2014

    • New oncology-focused partnerships with USF Health, LUNGevity, and CTCA Eastern expand our reach and research into lung and other cancers
    • Our collaboration with One Mind focuses attention and research on people with post-traumatic stress and traumatic brain injury
    • We sign our first broad research collaboration with Genentech to develop innovative ways of researching patients' real world experiences; initial focus is on cancer
    • A new partnership with Sage Bionetworks and Dr. Max Little seeks to map the severity of Parkinson's disease

Business Milestones 2013

    • Martin Coulter is named as PatientsLikeMe's first CEO
    • PatientsLikeMe unveils new tool to match patients with clinical trials worldwide
    • 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.
    • PatientsLikeMe and Boehringer Ingelheim establish a health information collaboration for patients with idiopathic pulmonary fibrosis
    • PatientsLikeMe builds out the next generation patient registry, a dynamic and collaborative environment to advance medicine

Research Milestones 2013

    • PatientsLikeMe publishes its 40th research study
    • A PROSPER consortium member, PatientsLikeMe works to improve safety reporting in all phases of drug development with patient-reported outcomes of adverse events
    • PatientsLikeMe selects four pilot researchers for the Open Research Exchange
    • A sleep survey among 5,256 PatientsLikeMe members reveals that compared to the general population, people living with chronic conditions are nine times more likely to be at risk of having insomnia, and that one of three respondents rarely or never get a good night's sleep
    • A study with the Partners Multiple Sclerosis Center at Brigham & Women’s Hospital in Boston reveals that the MS community on PatientsLikeMe is comparable to a clinic population, and validates the platform's outcome
    • 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.

Notable News 2013

    • R&D Director Paul Wicks is recognized by the Health Service Journal in its Top Innovators list
    • PharmaVOICE names co-founder Jamie Heywood to its list of the top 100 most inspiring people in the life-sciences industry
    • PatientsLikeMe is featured on Al Jazeera America
    • VP for Advocacy, Policy and Patient Safety Sally Okun becomes first nurse to present at TEDMED and 6th presenter from PatientsLikeMe to present on prestigious TED conference stage
    • PatientsLikeMe R&D Director and TED Fellow Paul Wicks presents at TED 2013

Disease Milestones 2013

    • Members contribute patient-reported data on more than 2,000 conditions, including 1 million symptom and treatment reports
    • PatientsLikeMe's fibromyalgia community grows to include 41,000 members; the MS community reaches 33,000 members
    • In conjunction with The AKU Society, PatientsLikeMe develops the world's first open registry for Alkaptonuria patients
    • PatientsLikeMe research team studies weekly fluctuations in Parkinson’s patients and finds the disease more variable than once thought
    • PatientsLikeMe's idiopathic pulmonary fibrosis (IPF) community reaches 1,500, making it one of the largest and most active IPF online patient networks. 

Business Milestones 2012

    • To date, PatientsLikeMe has now worked with 20+ pharmaceutical companies worldwide
    • Our team has now testified before or presented to the following government organizations:
      • Institute of Medicine
      • Centers for Disease Control & Prevention
      • National Biosurveillance Advisory Subcommittee
      • U.S. Department of Health and Human Services
      • U.S. Food and Drug Administration
      • National Institute of Health

Research Milestones 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
    • PatientsLikeMe becomes clinically robust resource with 25+ peer-reviewed research studies, earns 300 citations and 1,500 mentions in the scientific literature

Notable News 2012

    • The website is named to the Healthcare Internet Hall of Fame
    • PatientsLikeMe is ranked by MIT Technology Review as one of “50 Most Innovative Companies”
    • PatientsLikeMe's Director of Research, Paul Wicks PhD, is named a TED Fellow
    • The company is named one of "Britain's 50 New Radicals" 

Disease Milestones 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

Business Milestones 2011

    • Co-founder Ben Heywood presents at TEDx Cambridge on “Thriving Against Expectations”
    • PatientsLikeMe opens its website to people with any condition; evolves from 12 disease communities to one community with 1,200 diseases in first year
    • The company launches a new clinical trial matching feature that integrates with ClinicalTrials.gov and helps members identify relevant trials
    • The PatientsLikeMe research team develops tool to help MS patients identify barriers to properly taking their medication; licenses it for free research use

Research Milestones 2011

    • In Nature Biotechnology paper, PatientsLikeMe refutes 2008 PNAS paper on the efficacy of lithium carbonate on ALS; marks 1st 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
    • Award-winning study on patient-reported outcomes published in Journal of Medical Internet Research
    • PatientsLikeMe adds new health outcome measures (DLQI in psoriasis and ATEC in autism) so members/caregivers have easier way to do self-assessment and validating PROs

Notable News 2011

    • PatientsLikeMe's Director of Research Paul Wicks named to MIT Technology Review’s TR35 and awarded with Humanitarian of the Year award
    • The website is named one of "7 apps and sites that may save your life" by CBS News

Disease Milestones 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 1st time a peer-to-peer network used to evaluate a treatment in real time and refute clinical trial

Business Milestones 2010

    • Co-founder Jamie Heywood shares his vision on the future of medicine at TEDMED
    • R&D Director Paul Wicks talks about making “molehills out of mountains” with data at TEDx Berkshires

Research Milestones 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

Notable News 2010

    • PatientsLikeMe is ranked #23 in Fast Company’s "50 Most Innovative Companies" issue
    • The company is cited in Thomas Goetz’s book The Decision Tree, which explores how tools like PatientsLikeMe can help individuals engage in their health and make better, more informed choices

Disease Milestones 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

Business Milestones 2009

    • The company teams with 23andMe to help understand the genesis of Parkinson’s Disease
    • Co-founder Jamie Heywood testifies before the National Committee for Vital and Health Statistics on the future of e-healthcare and patients-centric healthcare

Research Milestones 2009

    • Nature Biotechnology reports advances on the PatientsLikeMe site including the ability to identify the potential for off-label uses of existing drugs

Notable News 2009

    • Co-founder Jamie Heywood named to WIRED Magazine’s 2009 Smart List
    • PatientsLikeMe is featured in a segment with Dr. Sanjay Gupta on CBS Evening News with Katie Couric
    • The company and its patients are highlighted in feature article in BusinessWeek called "Health 2.0:  Patients as Partners"

Disease Milestones 2009

    • PatientsLikeMe launches new communities for Fibromyalgia and chronic fatigue syndrome (CFS) patients
    • PatientsLikeMe research team develops the ALSFRS-EX to help record the function of severely patients with severe ALS to record their function
    • PatientsLikeMe launches new features for patients with rare ALS subtypes: primary lateral sclerosis (PLS) and progressive muscular atrophy (PMA)

Research Milestones 2008

    • PatientsLikeMe identifies higher rate of non-motor symptoms among young onset patients with Parkinson's disease, announces findings at YOPD Conference

Notable News 2008

    • Boston Business Journal names co-founder Ben Heywood “Champion in Healthcare”
    • The company is featured in New York Times Magazine article, “Practicing Patients,” by Thomas Goetz
    • PatientsLikeMe receives Prix Ars Electronica’s Award of Distinction

Disease Milestones 2008

    • PatientsLikeMe introduces a new community for people with mood conditions (announced and featured in the New York Magazine article "Practicing Patients" by Thomas Goetz)
    • The company conducts its first-ever study on Young-Onset Parkinson’s disease (YOPD) patients and finds they suffer greatly from non-motor symptoms
    • In March, PatientsLikeMe launches its next community for patients with HIV/AIDS including CD4 and viral load tracking
    • The company also launches first of its rare neurological disease communities - neuromyelitis optica (NMO), progressive supranuclear palsy (PSP) and multiple system atrophy (MSA) 

Research Milestones 2007

    • PatientsLikeMe publishes novel study indicating that excessive yawning is common in certain forms of ALS
    • PatientsLikeMe is named British Neuropsychiatry Association Scientific poster winner 

Notable News 2007

    • FierceHealthIT names PatientsLikeMe Top Health IT Innovator
    • The company receives first scientific award at the 20th anniversary meeting of the British Neuropsychiatry Association (BNPA)
    • Within months after launching, PatientsLikeMe is named by CNN Money as one of “15 Companies That Will Change The World” 

Disease Milestones 2007

    • PatientsLikeMe reaches and connects more diverse patients with 2nd and 3rd communities in MS and Parkinson’s  
    • The company releases first real-world treatment and symptom dataset, on ALS

Business Milestones 2006

    • In the Spring, the company launches its website, PatientsLikeMe.com
    • In November, Stephen Heywood, the inspiration for PatientsLikeMe, passes away 

Disease Milestones 2006

    • PatientsLikeMe launches flagship amyotrophic lateral sclerosis (ALS) community, which currently captures 5-10% of newly diagnosed patients in the U.S.

Business Milestones 2004

    • Inspired by the life experiences of Stephen Heywood, PatientsLikeMe is founded by his brothers Jamie and Ben Heywood and long-time family friend Jeff Cole
For media inquiries, please contact:
Margot Carlson Delogne
PatientsLikeMe
+1 781.492.1039
mcdelogne@patientslikeme.com