10/7/2013

About PatientsLikeMe North American Menopause Society Annual Meeting October 2013

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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.

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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 (37,000) Symptoms • Industry Reimbursement (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 tttreatment s common goals Gender Dates of Therapy o Generalized Anxiety Disorder (10,000) • Researchers Making Race Indication for Use • Providers o (10,000) Ethnicity Effectiveness Side Effects • Patients Location CER, PCOR, o Diabetes Type 2 (10,000) Adherence History HEOR Payer type o (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

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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 Progressive Supranuclear Palsy Autism Treatment Evaluation Checklist (ATEC) Autism Spectrum Disorder Neuromyelitis Optica Rating Scale (NORS) Neuromyelitis Optica

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Sample PLM Patient Profile

Section slide title Research & Collaborations

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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

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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

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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

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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

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BWH: Menopause impact on multiple sclerosis Deep Disease Modeling

Objectives: Enhanced matching to prove 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.

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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

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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

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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

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To learn listen well to impressions voiced by patients first.

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