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 my providers know Help me manage today’s data that I care about groups of people with me and use my data to symptoms without worrying common goals improve my care about tormorrow’s

Contented Fast decision required In limbo Caregiver Help me focus on Help me make the right Help me figure out what’s Help me give both of my my grandchildren, choice about wrong with me boys a good life not my health treatment…fast Patient-generated health data: common standards

Patient Experience Conditions Care Stakeholders Management Primary / Secondary (self & providers) Comorbids Diagnostic Journey Access & Symptoms Reimbursement Hospitalizations Patients

Age Treatments Industry Shared Decision Gender Dates of Therapy Regulators Making Race Indication for Use Payers Ethnicity Effectiveness Researchers Side Effects Providers Location CER, PCOR, Adherence History HEOR Payer type Stop Reasons Advice / Tips ActiveActive Safety Safety Related Data SurveillanceSurveillance Labs, Tests, BMI Free Text Narrative

5 ME/CFS Patient Experience

Proprietary & Confidential 6 7 8 9 1 Patient-centered community reports

What is it like to have ME / CFS?

Is my ME/CFS experience normal for someone like me? What does normal mean? Patient-centered community reports What do patients use to manage ME / CFS?

How do other patients like me treat their ME / CFS? What were their results and experiences? Current ME/CFS Registry Demographic Data

Proprietary & Confidential 13 Patient Reported Outcomes

Proprietary & Confidential 14 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 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

15 With support from http://www.openresearchexchange.com 16 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 only open library of patient-reported instruments and health measurements

With support from PRO measure development platform

 Clear – I understand what it means

 Answerable – it’s information I have

 Efficient – it respects my time

 Relevant – describes my experience

 Educational – what is & isn’t part of my condition

 Harmless – doesn’t make me sad, anxious, symptomatic

 Actionable – helps me change, discuss with providers

With support from Research

Proprietary & Confidential 19 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 better understanding of the consequences of taking a “drug holiday” • 12% of members changed their physician

20 Patient illuminate gaps in standard of care

53%

54%

Wicks & Fountain (2012) Patient assessment of physician performance of epilepsy quality of care measures. Neurology Clinical Practice 2:335

Proprietary & Confidential 21 Excerpt: The Health Blog

“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

22 Proprietary & Confidential 23 PatientsLikeMe publications 40+ disease specific and general scientific research publications

24 Partner Opportunities

Proprietary & Confidential 25 A turnkey registry for research, recruitment

Traditional Traditional PatientLikeMe’s Clinical Research Patient Registry Open Registry

 A well-defined population  A well-defined, growing  Comprehensive patient studied under controlled population fitting inclusion population where researchers can conditions and exclusion criteria integrate new questions and 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 to study in research and can interact test against a specific regularly with researchers question or clinical insight  Offers 360 degree view of patients, 365 days a year

26 Partnering with PatientsLikeMe

Increased awareness…  Customized landing pages  Customized nonprofit page in the community to target awareness campaigns to your followers  Managed interactions and communications with patients, advocates and mentors  Promote programs using profile feeds and auto following  Guest partner hosting on forum  Cross promotions via Facebook, Twitter and Flickr  Joint press releases, blogs

27 Useful resources & links

Chronological Bibliography June 2014 PDF

Data For Good video

A family's story