DOCSLIB.ORG

About Patientslikeme North American Menopause Society Annual Meeting October 2013

Total Page：16

File Type：pdf, Size：1020Kb

Download full-text PDF Read full-text
About Patientslikeme North American Menopause Society Annual Meeting October 2013 10/7/2013 About PatientsLikeMe North American Menopause Society Annual Meeting October 2013 Proprietary & Confidential 2 The start of PatientsLikeMe Who we are • Inspired by their brother Stephen’s a research-based patient network that improves lives battle with ALS (Lou Gehrig’s disease), Ben and Jaime Heywood co-founded the company in 2004 with long-time Patients can: friend, Jeff Cole. • After Stephen was diagnosed with ALS, the Heywood family began searching for ideas that would extend and improve Stephen’s life, including the launch of the nonprofit ALS Therapy Development Institute. • The co-founders and team conceptualized and built a health data-sharing platform that could transform the way patients manage their own conditions, change the way industry conducts research and improve patient care. Proprietary & Confidential 3 Proprietary & Confidential 4 Patient PatientsLikeMe Data Fields Stakeholders Data Utilization Who are our members? Reporters Patient Experience • 2,000+ diseases Conditions Care Management • 220,000+ people Primary / Secondary (self & provider) Comorbids • Top 10 communities Diagnostic Journey Access & o Fibromyalgia (37,000) Symptoms • Industry Reimbursement Multiple Sclerosis (31,000) Hospitalizations • Regulators Researcher/advocate Leader/connector o Help me build tools to Help me organize Age Treatments • Payers/Plan drive the development of groups of people with o Major Depressive Disorder (14,000) s Share Decision new tttreatmen ts common goals Gender Dates of Therapy o Generalized Anxiety Disorder (10,000) • Researchers Making Race Indication for Use • Providers o Chronic Fatigue Syndrome (10,000) Ethnicity Effectiveness Side Effects • Patients Location CER, PCOR, o Diabetes Type 2 (10,000) Adherence History HEOR Payer type o Epilepsy (10,000) Stop Reasons Advice / Tips o Parkinson’s Disease (7500) Active Safety Related Data Surveillance Tweaker/tracker Activated/fact based o ALS (6200) Help me capture the Help my providers know Labs, Tests, BMI data that I care most me o Rheumatoid Arthritis (6000) about Free Text Narrative Proprietary & Confidential 5 Proprietary & Confidential 6 1 10/7/2013 Condition-specific Outcome Measures How do patients use PatientsLikeMe? Example: A multiple Measure Condition sclerosis pt’s profile on PatientsLikeMe Multiple Sclerosis Rating Scale (MSRS) Multiple Sclerosis Pulmonary Fibrosis Severity Score Pulmonary Fibrosis Pain and Fatigue Rating Scale (PFRS) Fibromyalgia Chronic Fatigue Syndrome Seizure Survey Epilepsy Functional Rating Scale Amyotrophic lateral sclerosis Parkinson’s Disease Rating Scale (PDRS) Parkinson’s Disease Psoriasis Dermatology Quality of Life Index Movement Disorder Rating Scale Multiple System Atrophy Progressive Supranuclear Palsy Autism Treatment Evaluation Checklist (ATEC) Autism Spectrum Disorder Neuromyelitis Optica Rating Scale (NORS) Neuromyelitis Optica PROPRIETARY & October 7, 2013 7 CONFIDENTIAL 8 Sample PLM Patient Profile Section slide title Research & Collaborations October 7, 2013 PROPRIETARY & 9 Proprietary & Confidential 10 CONFIDENTIAL Epilepsy patients’ assessment: Sharing health data => Shared insights AAN performance measure of quality care Strongly Agree Disagree Strongly N/A Quality measure agree (%) (%) (%) disagree (%) (%) After using PatientsLikeMe… 1a. Type of seizures 51 38 8 4 0 • 71% HIV patients agreed or strongly b. Frequency of seizures 62 25 5 5 2 agreed that they took more of an interest in their lab values 2. Know epilepsy syndrome 48 33 13 6 0.5 • 63% of members aggyreed they had a 3. EEG performed 89 10.5 0 0.5 0 better understanding of the 4. Neuroimaging performed 86 11 1 2 0.5 consequences of taking a “drug holiday” 5. Side effects assessed 44 24 15 14 2 • 12% of members changed their 6. Epilepsy surgery referral* 35 13 14 20 19 physician 7. Discussed safety issues 48 26 9 12 5 8. Birth control** 27 19 10 7 37 n=221 except for *data only shown for patients with intractable epilepsy, **question only asked of females aged 14–44 EEG, electroencephalography Proprietary & Confidential 11 2 10/7/2013 CNS‐SCT‐011032 Quality measure performance by specialty Excerpt: The Health Blog (n=44) (n=154) (n=15) “If patient engagement were a drug, it would be the blockbuster drug of the century and (n=8) malpractice not to use it.” - Leonard Kish 8/28/12 HL7 Standards Blog Box plots of total number of measures performed (excluding contraception & surgery referral items) broken down by specialty of treating physician. Black line represents the median, box is the inter-quartile range (IQR), whiskers are 1.5x IQR, and circles are outliers (>1.5x IQR) PCP, primary care physician Wicks P, Fountain N. Poster presented at AAN 2011 Proprietary & Confidential 14 This prospective epilepsy survey… …became this clinical study in 2012 • One-third of respondents has no one in “the real world” with whom to discuss their epilepsy. After joining PatientsLikeMe, two-thirds reported a connection to at least one other person with epilepsy • 59% -the site has given me a better understanding of my seizures • 28% - the site gave me more & better control over my condition • 23% - I have had fewer visits to the ER • 30% - The site helped me be more adherent • 50% - The site helped me understand side effects • 21% - Because of the site I insisted on seeing a specialist • 27% - The site helped me find ways to reduce side effects • 49% - recording my seizures helps me manage my condition Proprietary & Confidential 15 Proprietary & Confidential 16 Policy on Optimal Epilepsy Management (POEM) Aetna Partners with PatientsLikeMe Objective: To examine the impact of PatientsLikeMe (PLM) in US Veterans with epilepsy on patient self-management and self-efficacy • Principal Investigator: John Hixson, MD, VA Epilepsy Centers of Excellence • Validated co-primary outcome measures: Epilepsy Self Efficacy Scale (ESES) and Epilepsy Self-Management Scale (ESMS) • Approved by VA and UCSF IRBs • Recruitment began in January 2013; expected to fully enroll early 2014 • Full protocol: http://clinicaltrials.gov/ct2/show/NCT01762215 Aetna’s landing page converted better than PLM’s own homepage Proprietary & Confidential 17 Proprietary & Confidential 18 3 10/7/2013 Case study: Aetna partnership Who joined PatientsLikeMe from Aetna? Objectives • Jointly understand the benefits of collaboration between Aetna and PatientsLikeMe • For Aetna, generate a proof point of the benefits of online patient communities to plan sponsors and and learn more about the engagement of its subscribers/members who use platforms like PatientsLikeMe • For PatientsLikeMe, grow the patient research network via Aetna referrals and generate a proof point of the benefits of PatientsLikeMe to its health plan customers Proprietary & Confidential 19 Proprietary & Confidential 20 BWH: Menopause impact on multiple sclerosis Deep Disease Modeling Objectives: Enhanced matching to prove lithium Our data shows Parkinson’s disease is more 1. To characterize menopause in a well-described and longitudinally does not slow ALS variable than clinical trials assume followed multiple sclerosis sample. 2. To investigate patients’ perceptions of the effect on menopause on the course of multiple sclerosis. 3. To assess whether patient-reported disease severity scores worsen after menopause. • Collaborators: Partners MS Center, BWH, HMS, PatientsLikeMe • Background: Many women with MS are postmenopausal, but information We are prototyping models in MS on patient about the menopausal transition in MS is scarce. data to apply to clinical & genetic datasets • Study: Investigated patient-reported menopausal changes in a large online research platform. • Discussion: Among 513 respondents iatrogenic menopause was common. 1/3 to 1/2 reported worsening of MS-related symptoms after menopause. Proprietary & Confidential 21 Human Factors: patient-centered outcomes 9 Clear – I understand what it means 9 Answerable – it’s information I have 9 Efficient – it respects my time 9 Relevant – describes myyp experience 9 Educational – what is & isn’t part of my condition 9 Harmless – doesn’t make me sad, anxious, Patient-reported Outcomes: symptomatic 9 Actionable – helps me change, discuss with Open Research Exchange providers Proprietary & Confidential 23 24 4 10/7/2013 Patient-centered research and recruitment Open Research Exchange • World’s first open participation Traditional Traditional PatientLikeMe’s research platform for creating Clinical Research Patient Registry Open Registry patient-reported health outcome measurements • Particular attention given to • A well-defined population • A well-defined, growing • Comprehensive patient developing patient-centered studied under controlled population fitting inclusion population where researchers conditions and exclusion criteria can integrate new questions and outcome measures… measures anytime • Patients are subjects, not • Patients only interact with partners in the research researchers during the • Patients are proactively involved since research is designed study in research and can interact to test against a specific regularly with researchers question or clinical insight http://www.openresearchexchange.com • Offers 360 degree view of patients, 365 days a year With support from Proprietary & Confidential 25 Proprietary & Confidential 26 How Open Research Exchange works ORE Pilot Researchers • Quickly design and field measures • Test and get feedback from real patients on our network • Add to and browse the only open library of patient-reported instruments and health measurements Proprietary & Confidential With support from Proprietary & Confidential 28 27 To learn listen well to impressions voiced by patients first. 5.
Load more

Recommended publications
  • Downloads/Drugs/Guidances/UCM193282.Pdf
    Bradley et al. Research Involvement and Engagement (2016) 2:33 DOI 10.1186/s40900-016-0047-6 RESEARCHARTICLE Open Access Patients’ motivations and interest in research: characteristics of volunteers for patient-led projects on PatientsLikeMe Meaghan Bradley* , Julia Braverman, Magdalena Harrington and Paul Wicks * Correspondence: [email protected] Plain English summary: PLM is an online platform that provides tools for PatientsLikeMe, Inc., 160 Second St., individuals to track their health and connect with other patients and while PLM has Cambridge, MA 02142, USA invited patients to participate in various research projects throughout the years, an examination into what motivates patients to want to get involved in clinical research has not been done. During our analysis of applications submitted by members of the PLM community, we looked for reasons patients want to participate in research and their overall beliefs about clinical research, in general. In addition, we analyzed obstacles and barriers toward patients’ research participation. We observed the following: Patients are typically motivated by their individual needs and are most interested in research specific to their own condition. To get the most from patients’ involvement and to enhance patients’ contribution towards research goals, researchers should explain the research goal and requirements of each goal in clear and transparent terms, making it easy for patients to understand, thus avoiding any potential miscommunication. Future studies are needed to determine the best methods for involving patients in clinical research. Background: Historically, throughout the clinical and medical research arenas, patients have been perceived as passive “subjects” rather than as individuals who may have thoughts regarding research development, research plans, implementation of research studies, and data analysis.
    [Show full text]
  • Patient, Study Thyself Paul Wicks
    Wicks BMC Medicine (2018) 16:217 https://doi.org/10.1186/s12916-018-1216-2 EDITORIAL Open Access Patient, study thyself Paul Wicks Abstract The past 15 years have seen the emergence of a new paradigm in medical research, namely of people living with medical conditions (whether patients, parents, or caregivers) using digital tools to conduct N-of-1 trials and scientifically grounded research on themselves, whilst using the Internet to form communities of like-minded individuals willing to self-experiment. Prominent examples can be found in amyotrophic lateral sclerosis/motor neurone disease (the ‘lithium study’ on PatientsLikeMe), Parkinson’sdisease(‘digital patient’ Sara Riggare), and diabetes (the ‘open artificial pancreas’ of the #WeAreNotWaiting movement). Through transparency, data sharing, open source code, and publication in the peer-reviewed scientific literature, such activities conform to expected scientific conventions. However, other conventions, such as ethical oversight, regulation, professionalization, and the ability to translate this new form of relatively biased data into generalizable decisions, remain challenged. While critics worry such participant-led research merely muddies the waters of high-quality medical research and exposes patients to new harms, the potential is there to enroll millions of active minds in unravelling the wicked problems of complex medical disorders that degrade the human health span. Keywords: Patient engagement, Medical informatics, Patient-reported outcomes, Smartphones, Machine learning Background when they venture forth from their ivory towers, but At the time of BMC Medicine’s launch 15 years ago, I that science and research are a set of tools and think- was conducting what I thought was fairly ‘high-tech’ ing methods that can be applied by anyone.
    [Show full text]
  • The Patients Like Me Journey
    The PatientsLikeMe Journey May 9th, 2009 Paul Wicks, PhD R&D Director Eurordis 2009 1 Contents § Background § Capabilities § Research § Business model § Helping your patients § Discussion Eurordis 2009 2 Background – Three brothers § Stephen Heywood – Builder / carpenter, dx’d with ALS @ 29 yrs. Survived 8 years. § Jamie Heywood – Mechanical engineer, founded ALS Therapy Development Foundation (ALSTDF, , now ALSTDI I) to find a cure for Stephen § Ben Heywood – Film producer in Hollywood § Jeff Cole – Friend from college, also MIT MIT Eurordis 2009 3 Taking the fight against ALS public § Stephen became major face in US ALS coverage § Relationship between Stephen and Jamie documented in book by Pulitzer er­ prize winning book § 5­year documentary film about Stephen and ALSTDF; “So Much So Fast” § Died in October 2006 Eurordis 2009 4 First­generation web­ ­based networking • Anonymous (non validated) • Often inaccurate or unattributed medical information • Provides support and empathy for small groups • Difficult to connect to those with the information to help Eurordis 2009 5 First­generation social networks • Some validation through association with illness • “Light” shared information on current treatments • Improved support and richer social connections • No timeline or illness history Eurordis 2009 6 PatientsLikeMe – The idea § “Given my status, what is the best outcome I can expect to achieve and how do I get there?” § Making an emphasis on sharing information could help patients make their decisions § The type of relationships identified by online dating services could be transformed to help someone find a “patient like me” to offer their knowledge, experience, and support Eurordis 2009 7 Our core values Honor Patients’ Trust Openness Our patients trust us with their most Per our Openness Philosophy, we valued health information.
    [Show full text]
  • Chronic Fatigue Syndrome Advisory Committee: Patient Registry Model
    Chronic Fatigue Syndrome Advisory Committee: Patient Registry Model Ben Heywood, Co-founder & President June 17, 2014 PatientsLikeMe: share, connect, learn Step 1: Step 2: Create/update your Find support from and patient profile and compare experiences share it with others with other patients like you patient engagement cycle Step 5: Step 3: Play an integral and Learn from aggregated participatory role in your community Treatment health care and Symptom Reports Step 4: Take your patient profile to your provider appointments for an improved dialogue 2 Patient Powered Research Network patients data insights - 260,000+ Patients - 21 mm structured data - 40+ peer-reviewed papers - 2000+ Diseases points Networking ‘dose effect’ - Top Communities 400,000 symptom reports Off-label effectiveness data Fibromyalgia 350,000 condition PRO scores Data sharing preferences Multiple Sclerosis 150,000 side effect reports Burden of chronic illness Major Depressive Disorder 110,000 treatment stop reports Risk / benefit tolerance Diabetes Type 2 100,000 quality of life scores Insomnia study Generalized Anxiety Disorder - 3 mm free text fields Patient perspective on trials Chronic Fatigue Syndrome 2 mm forum conversations - Safety monitoring platform Epilepsy 750,000 journal stories - Patient-generated Parkinson’s Disease 320,000 private messages Rheumatoid Arthritis taxonomy 90,000 peer-peer comments 3 Patient-centered persona based design Tweaker/tracker Leader/connector Activated, fact-based Slow decision possible Help me capture the Help me organize Help
    [Show full text]
  • Dave Clifford, Head of Public Health and Government Affairs, Patientslikeme
    INNOVATIONS CONFERENCE -- PATIENTSLIKEME SPEAKER: DAVE CLIFFORD, HEAD OF PUBLIC HEALTH AND GOVERNMENT AFFAIRS, PATIENTSLIKEME CLIFFORD: Hi. I'm Dave Clifford from PatientsLikeMe. I'm gonna talk about patient value in online communities a bit from our experiences as well as the use of some of the things that we do in a patient community for researchers and clinicians. So this is Stephen Heywood and he is the middle brother of the two founders of PatientsLikeMe. And we started out as an ALS -- I've been in the U.K. a lot so I say motor neuron disease, so pardon me if I slip, flip back and forth -- an ALS community. So Stephen was diagnosed with ALS in his late twenties. He came from a family of engineers. And I don't know how many of you hang out with engineers but when engineers see a problem they try and break it down into component parts and solve the problem. So because there were three engineers in the family, they just figured that biologists and doctors didn't know what they were doing and if they used engineering techniques instead, they could come up with a cure for ALS before Stephen passed away. One of the components of this was creating an institution called the ALS Therapy Development Institute, which is a non-profit that has done an enormous amount of mouse work in retesting every available therapeutic that was -- that has gone through a phase one clinical trial for patients with ALS in a more rigorous mouse study and were unable to replicate the results of any of the previous mice studies that led to them being approved for human trials by up- powering the studies and -- and introducing more manufacturing controls into the process.
    [Show full text]
  • But When It Comes to Clinical Trials, Can We Afford To
    CLINICAL INVESTIGATION OPINION Clin. Invest. (2012) 2(2), 125–127 Information wants to be free, but when it comes to clinical trials can we afford to let it be? Paul Wicks* ‘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, volun- tary ‘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. For me, it feels increasingly challenging to delineate the margins where free data is good or bad. A highly networked, mobile-enabled popular uprising is considered a ‘revolution’ when it’s against an oppressive regime, but considered a “The double-blind, placebo-controlled, ‘menace’ when it is a disenfranchised mob rioting in a western democracy. Bravely randomized control trial (RCT) is recorded videos of civilians attacked by autocratic regime military forces are undoubtedly one of the most elegant essential in prosecuting crimes against humanity, but videos leaked from within inventions of science; designed a democratic military are a ‘threat to national security’. So while data itself may specifically not just to answer the want to be free, we don’t always want it to be. And so, to clinical trials. question of whether a treatment is From a societal perspective, the requirement for any trials conducted in the effective, but to do this with in-built USA to register on ClinicalTrials.gov can only be a good thing in preventing safeguards to protect against past sins, such as suppressing negative trials or changing end points.
    [Show full text]
  • Neurology® Clinical Practice Virtual Visits for Parkinson Disease a Case Series
    Neurology® Clinical Practice Virtual visits for Parkinson disease A case series Vinayak Venkataraman, BS Sean J. Donohue Kevin M. Biglan, MD, MPH Paul Wicks, PhD E. Ray Dorsey, MD, MBA Summary We sought to characterize recommendations and feedback of patients with Parkinson disease, each offered a free telemedicine consultation with a spe- cialist. Visits consisted of history, neurologic exami- nation, and recommendations. Midway through the program, patients were asked to complete an online satisfaction survey. From August 2012 to May 2013, 55 patients in 5 states (mean age 67.8 years) participated, with 80% of visits conducted from their home. Patients with Parkinson disease were recommended to exercise (86%), change current medication (63%), and add new medication (53%). Thirty-three of 35 consecutive patients completed a survey. Patient satisfaction exceeded 90% for vir- tually all aspects of the visit measured. Providing care to patients in their homes via telemedicine is feasible, results in changes to care, and is well- received. elemedicine has the potential to transform patient care. Applications within neurol- ogy have grown rapidly, and included virtually every subspecialty,1 but have gen- erally focused on providing care to patients in hospitals (e.g., telestroke)2 or remote clinics (e.g., within the Veterans Affairs system or in Canada).3,4 Using TWeb-based video conferencing to deliver care to individuals with neurologic conditions in the Department of Neurology (VV, ERD), Johns Hopkins Medicine, Baltimore; Johns Hopkins University (SJD), Baltimore, MD; Department of Neurology (KMB), University of Rochester Medical Center, NY; and PatientsLikeMe (PW), Cambridge, MA. Funding information and disclosures are provided at the end of the article.
    [Show full text]
  • Patient-Reported Outcomes As a Source of Evidence in Off-Label Prescribing: Analysis of Data from Patientslikeme
    JOURNAL OF MEDICAL INTERNET RESEARCH Frost et al Original Paper Patient-reported Outcomes as a Source of Evidence in Off-Label Prescribing: Analysis of Data From PatientsLikeMe Jeana Frost1, PhD; Sally Okun2, RN; Timothy Vaughan2, PhD; James Heywood2, BS; Paul Wicks2, PhD 1VU Amsterdam, KankerNL, Amsterdam, Netherlands 2PatientsLikeMe Inc., Cambridge, MA, United States Corresponding Author: Jeana Frost, PhD VU Amsterdam KankerNL De Boelelaan 1081 Amsterdam, 1081 HV Netherlands Phone: 31 20 598 8636 Fax: 31 20 598 6863 Email: [email protected] Abstract Background: Evaluating a new use for an existing drug can be expensive and time consuming. Providers and patients must all too often rely upon their own individual-level experience to inform clinical practice, which generates only anecdotal and unstructured data. While academic-led clinical trials are occasionally conducted to test off-label uses of drugs with expired patents, this is relatively rare. In this work, we explored how a patient-centered online research platform could supplement traditional trials to create a richer understanding of medical products postmarket by efficiently aggregating structured patient-reported data. PatientsLikeMe is a tool for patients, researchers, and caregivers (currently 82,000 members across 11 condition-based communities) that helps users make treatment decisions, manage symptoms, and improve outcomes. Members enter demographic information, longitudinal treatment, symptoms, outcome data, and treatment evaluations. These are reflected back as longitudinal health profiles and aggregated reports. Over the last 3 years, patients have entered treatment histories and evaluations on thousands of medical products. These data may aid in evaluating the effectiveness and safety of some treatments more efficiently and over a longer period of time course than is feasible through traditional trials.
    [Show full text]
  • Scaling Patientslikeme Via a “Generalized Platform”
    JOURNAL OF MEDICAL INTERNET RESEARCH Wicks et al Original Paper Scaling PatientsLikeMe via a ªGeneralized Platformº for Members with Chronic Illness: Web-Based Survey Study of Benefits Arising Paul Wicks1, PhD; Eileen Mack Thorley1, MPH; Kristina Simacek1, MA; Christopher Curran1, BA; Cathy Emmas2, PhD 1PatientsLikeMe, Cambridge, MA, United States 2AstraZeneca UK Ltd, Luton, United Kingdom Corresponding Author: Paul Wicks, PhD PatientsLikeMe 160 Second Street Cambridge, MA, 02142 United States Phone: 1 6174755108 Email: [email protected] Abstract Background: Launched in 2006 for patients with amyotrophic lateral sclerosis, PatientsLikeMe is an online community offering patient-reported outcomes, symptom tracking, and social features. Every member of the site can see all the data reported by every other member, view aggregated reports, identify ªpatients like them,º and learn about treatment options in order to live better with their condition. In previous studies, members reported benefits such as improved condition knowledge, increased medication adherence, and better management of side effects. However, the site evolved in 2011 from condition-specific ªverticalº communities consisting only of people with the same disease to a ªgeneralized platform,º in which every patient could connect with every other patient regardless of condition and with generic, rather than condition-specific, data tools. Some, but not all, communities received further custom tracking tools. Objective: We aimed to understand (1) whether members of PatientsLikeMe using the generalized platform still reported similar benefits and (2) assess factors associated with benefits, such as community customization, site use, and patient activation. Methods: A cross-sectional retrospective custom survey was fielded to 377,625 members between 2016 and 2017 including the Patient Activation Measure (PAM).
    [Show full text]
  • Sharing Health Data for Better Outcomes on Patientslikeme Reviewed by Melanie Swan, Annie Lau, and Heather Bromberg Paul Wicks
    Sharing Health Data for Better Outcomes on PatientsLikeMe Reviewed by Melanie Swan, Annie Lau, and Heather Bromberg Paul Wicks, PhD,corresponding author1 Michael Massagli, PhD,1 Jeana Frost, PhD,1 Catherine Brownstein, PhD,1 Sally Okun, RN,1 Timothy Vaughan, PhD,1 Richard Bradley, RN,1 and James Heywood, SB1 1PatientsLikeMe Inc., Research & Development, Cambridge, United States Paul Wicks, PatientsLikeMe Inc., Research & Development, 155 2nd Street, Cambridge, 02141, United States, Phone: 1 6172296655, Fax: 1 8668506240, Email: [email protected]. Monitoring Editor: Gunther Eysenbach Corresponding author. Received April 15, 2010; Revisions requested May 10, 2010; Revised May 14, 2010; Accepted May 20, 2010. This is an open-access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included. Background PatientsLikeMe is an online quantitative personal research platform for patients with life-changing illnesses to share their experience using patient-reported outcomes, find other patients like them matched on demographic and clinical characteristics, and learn from the aggregated data reports of others to improve their outcomes. The goal of the website is to help patients answer the question: “Given my status, what is the best outcome I can hope to achieve, and how do I get there?” Objective Using a cross-sectional online survey, we sought to describe the potential benefits of PatientsLikeMe in terms of treatment decisions, symptom management, clinical management, and outcomes.
    [Show full text]
  • Testimony of James Heywood Co-Founder and Chairman Patientslikeme Inc. Before the National Committee on Vital and Health Statist
    Testimony of James Heywood Co-Founder and Chairman PatientsLikeMe Inc. Before the National Committee on Vital and Health Statistics Subcommittee on Privacy, Confidentiality and Security May 20, 2009 - - - On behalf of PatientsLikeMe and the 35,000+ patient members of our online community, I thank you for the invitation to testify before your Subcommittee regarding privacy issues related to patient- facing online services and the future landscape of healthcare. PatientsLikeMe (www.patientslikeme.com) is a free online community for people with life-changing diseases, including ALS, Multiple Sclerosis, Parkinson’s disease, HIV/AIDS, Mood Disorders, Fibromyalgia and orphan diseases (such as Devic’s Neuromyelitis Optica, Progressive Supranuclear Palsy and Multiple System Atrophy). Our mission is to improve the lives of patients through new knowledge derived from their shared real-world experiences and outcomes. To do so, we give our members easy-to-use, clinically validated outcome management tools so they can share all of their disease-related medical information. Our website is also designed to foster social interaction for patients to share personal experiences and provide one another with support. The result is a patient- centered platform that improves medical care and accelerates the research process by measuring the value of treatments and interventions in the real world. Founded in 2004 by myself, my brother Benjamin Heywood, and long-time friend Jeff Cole, PatientsLikeMe was inspired by our personal experiences with ALS; our brother and friend, Stephen Heywood, was diagnosed with this disease at the age of 29. We are a privately funded company that aggregates our members’ health information to do comparative analysis and we sell that information to partners within the industry (e.g., pharmaceutical, insurance companies, medical device companies, etc.).
    [Show full text]
  • Research Posters Bibliography
    Research posters bibliography THE COMPLETE COLLECTION OF PATIENTSLIKEME RESEARCH POSTERS May 2018 For questions regarding posters, publications and presentations please email [email protected]. 1 2017 Final results from an open-label, single-center, hybrid-virtual 12-month trial of Lunasin for patients with ALS Presented: 28th International Symposium on ALS/MND 2017 Primary Community: ALS Lunasin is a soy-derived peptide suggested as having reversed a single and well-publicized case of ALS. Following a review by ALS Untangled we collaborated with Duke University Medical Center to conduct an open-label hybrid virtual trial of Lunasin using historical controls on PatientsLikeMe. We enrolled 50 participants in 5.5 months, with overall survivor retention of 84% at final 12-month study visit. Three matched control participants were identified for each treated patient, and unfortunately, we found no evidence of slowing disease. There were seventeen adverse events including two serious (constipation requiring hospitalization). We found no evidence that Lunasin can slow ALS but found our virtual trial approach to be acceptable to patients and to yield useful data. Bedlack R, Spector A, Morgan E, Wicks P, Vaughan T, Blum R, Dios A, Sadri-Vakili G (2017) Final results from an open-label, single-center, hybrid-virtual 12-month trial of Lunasin for patients with ALS. 28th International Symposium on ALS/MND 2017, Boston, MA, USA, December 8-10, 2017 (Poster) Facilitating data transfer from a patient community to the ALS Online Genetics Database (ALSoD) Presented: 28th International Symposium on ALS/MND 2017 Primary Community: ALS The ALS online database (ALSoD) is a freely available user-friendly online bioinformatics tool for ALS genetics research.
    [Show full text]