10/7/2013 About PatientsLikeMe North American Menopause Society Annual Meeting October 2013 Proprietary & Confidential 2 The start of PatientsLikeMe Who we are a research-based patient network that improves lives • Inspired by their brother Stephen’s 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 Who are our members? Patient PatientsLikeMe Data Fields Stakeholders Data Utilization Reporters Patient Experience • 2,000+ diseases Conditions Care • 220,000+ people Management Primary / Secondary (self & provider) • Top 10 communities Comorbids Diagnostic Journey o Fibromyalgia (37,000) Access & • Industry Symptoms Reimbursement o Multiple Sclerosis (31,000) • Regulators Researcher/advocate Leader/connector Hospitalizations Help me build tools to Help me organize • Payers/Plan o Major Depressive Disorder (14,000) Age Treatments drive the development of groups of people with s s new treatments t t t common goals l Share Decision o Generalized Anxiety Disorder (10,000) Gender Dates of Therapy Making • Researchers Indication for Use Race o Chronic Fatigue Syndrome (10,000) • Providers Effectiveness Ethnicity • Patients Side Effects o Diabetes Type 2 (10,000) CER, PCOR, Location HEOR Adherence History o Epilepsy (10,000) Payer type Stop Reasons o Parkinson’s Disease (7500) Advice / Tips Active Safety Tweaker/tracker Activated/fact based o ALS (6200) Related Data Surveillance Help me capture the Help my providers know Labs, Tests, BMI o Rheumatoid Arthritis (6000) data that I care most me about Free Text Narrative 6 Proprietary & Confidential 5 Proprietary & Confidential 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 8 CONFIDENTIAL Sample PLM Patient Profile Section slide title Research & Collaborations 9 October 7, 2013 PROPRIETARY & 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 agreed they had a g y 3. EEG performed p 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 5. Side effects assessed 44 24 15 14 2 holiday” 6. Epilepsy surgery referral* 35 13 14 20 19 • 12% of members changed their 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 Aetna Partners with PatientsLikeMe (POEM) 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 Aetna’s landing page converted better than converted better than PLM’s own homepage 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: Our data shows Parkinson’s disease is more Enhanced matching to prove lithium variable than clinical trials assume does not slow ALS 1. To characterize menopause in a well-described and longitudinally 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 data to apply to clinical & genetic datasets about the menopausal transition in MS is scarce. • Study: Investigated patient-reported menopausal changes in a large online research platform. • Discussion: Among 513 respondents i atrogenic menopause was common. 1/3 to 1/2 reported worsening of MS-related symptoms after menopause. Proprietary & Confidential 21 Human Factors: patient-centered outcomes � Clear – I understand what it means � Answerable – it’s information I have � Efficient – it respects my time � Relevant – describes my experience y p � Educational – what is & isn’t part of my condition Patient-reported Outcomes: � Harmless – doesn’t make me sad, anxious, symptomatic Open Research Exchange � Actionable – helps me change, discuss with providers 24 Proprietary & Confidential 23 4
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