About PatientsLikeMe North American Menopause Society Annual - - PDF document

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North American Menopause Society

Annual Meeting October 2013

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About PatientsLikeMe

The start of PatientsLikeMe

• 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 friend, Jeff Cole.

• After Stephen was diagnosed with

ALS, the Heywood family began

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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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Who we are

a research-based patient network that improves lives

Patients can:

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Patient Experience PatientsLikeMe Data Fields Patient Reporters Stakeholders Data Utilization

Care Management (self & provider) Access & Reimbursement

• Industry
• Regulators
• Payers/Plan

s

Conditions

Age

Diagnostic Journey Symptoms Primary / Secondary Hospitalizations Comorbids Treatments Share Decision Making CER, PCOR, HEOR

s

• Researchers
• Providers
• Patients

Gender Race Ethnicity Location Payer type

Active Safety Surveillance Effectiveness Dates of Therapy Indication for Use Adherence History Side Effects Stop Reasons Advice / Tips

Related Data

Labs, Tests, BMI Free Text Narrative

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Who are our members?

• 2,000+ diseases
• 220,000+ people
• Top 10 communities
• Fibromyalgia (37,000)
• Multiple Sclerosis (31,000)
• Major Depressive Disorder (14,000)

Help me build tools to drive the development of t t t

Researcher/advocate

Help me organize groups of people with l

Leader/connector

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• Generalized Anxiety Disorder (10,000)
• Chronic Fatigue Syndrome (10,000)
• Diabetes Type 2 (10,000)
• Epilepsy (10,000)
• Parkinson’s Disease (7500)
• ALS (6200)
• Rheumatoid Arthritis (6000)

new treatments common goals Help me capture the data that I care most about

Tweaker/tracker

Help my providers know me

Activated/fact based

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Condition-specific Outcome Measures

Measure Condition 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

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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

How do patients use PatientsLikeMe?

Example: A multiple sclerosis pt’s profile

• n PatientsLikeMe

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Sample PLM Patient Profile

Section slide title

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Research & Collaborations

Sharing health data => Shared insights

After using PatientsLikeMe…

• 71% HIV patients agreed or strongly

agreed that they took more of an interest in their lab values

• 63% of members agreed they had a

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g y better understanding of the consequences of taking a “drug holiday”

• 12% of members changed their

physician

Epilepsy patients’ assessment: AAN performance measure of quality care

Quality measure Strongly agree (%) Agree (%) Disagree (%) Strongly disagree (%) N/A (%)

• 1a. Type of seizures

51 38 8 4

• b. Frequency of seizures

62 25 5 5 2

• 2. Know epilepsy syndrome

48 33 13 6 0.5

• 3. EEG performed

89 10.5 0.5

n=221 except for *data only shown for patients with intractable epilepsy, **question only asked of females aged 14–44 EEG, electroencephalography

p

• 4. Neuroimaging performed

86 11 1 2 0.5

• 5. Side effects assessed

44 24 15 14 2

• 6. Epilepsy surgery referral*

35 13 14 20 19

• 7. Discussed safety issues

48 26 9 12 5

• 8. Birth control**

27 19 10 7 37

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(n=44) (n=154)

Quality measure performance by specialty

CNS‐SCT‐011032

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)

Wicks P, Fountain N. Poster presented at AAN 2011 (n=15) (n=8)

PCP, primary care physician

Excerpt: The Health Blog

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“If patient engagement were a drug, it would be the blockbuster drug of the century and malpractice not to use it.”

• Leonard Kish 8/28/12

HL7 Standards Blog

This prospective epilepsy survey…

• 28% - the site gave me more & better

control over my condition

• 59% -the site has given me a better

understanding of my seizures

• 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

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• 23% - I have had fewer visits to the ER
• 49% - recording my seizures helps me manage my

condition

• 50% - The site helped me understand

side effects

• 21% - Because of the site I insisted on

seeing a specialist

• 30% - The site helped me be more

adherent

• 27% - The site helped me find ways to reduce side

effects

…became this clinical study in 2012

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• 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)

Policy on Optimal Epilepsy Management (POEM)

Objective: To examine the impact of PatientsLikeMe (PLM) in US Veterans with epilepsy on patient self-management and self-efficacy

• 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

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Aetna Partners with PatientsLikeMe

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Aetna’s landing page converted better than PLM’s own homepage Aetna’s landing page converted better than PLM’s own homepage

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Case study: Aetna partnership

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

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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

Who joined PatientsLikeMe from Aetna?

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BWH: Menopause impact on multiple sclerosis

Objectives:

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

about the menopausal transition in MS is scarce.

• 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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Deep Disease Modeling

Enhanced matching to prove lithium does not slow ALS Our data shows Parkinson’s disease is more variable than clinical trials assume We are prototyping models in MS on patient data to apply to clinical & genetic datasets

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Patient-reported Outcomes: Open Research Exchange

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 Harmless – doesn’t make me sad, anxious, symptomatic Actionable – helps me change, discuss with providers

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Patient-centered research and recruitment

Traditional Clinical Research Traditional Patient Registry PatientLikeMe’s Open Registry

• Comprehensive patient

population where researchers can integrate new questions and measures anytime

• Patients are proactively involved

in research and can interact regularly with researchers

• Offers 360 degree view of

patients, 365 days a year

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• A well-defined population

studied under controlled conditions

• Patients are subjects, not

partners in the research since research is designed to test against a specific question or clinical insight

• A well-defined, growing

population fitting inclusion and exclusion criteria

• Patients only interact with

researchers during the study

Open Research Exchange

• World’s first open participation

research platform for creating patient-reported health

• utcome measurements

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http://www.openresearchexchange.com

With support from

• Particular attention given to

developing patient-centered

• utcome measures…

How Open Research Exchange works

• Quickly design and field

measures

• Test and get feedback

from real patients on our network

• Add to and browse the
• nly open library of

patient-reported instruments and health measurements

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With support from

ORE Pilot Researchers

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To learn listen well to impressions voiced by patients first.