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. We honor believe that sharing health that trust, and we are dedicated to information is good. Why? Because advancing the knowledge in the sharing will drive massive change in disease with the information they healthcare. share. PATIENTS FIRST
No surprises. Our members When people see our site, we want shouldn't be surprised by anything them to think, “Wow!” Achieving our we do. Our goal is to disclose what vision takes flawless execution and we do with members' information, a deep understanding of patient how we make money, as well as all needs. of our partnerships on the site.
Transparency Create WOW!
Eurordis 2009 8 How does PatientsLikeMe work?
SHARE FIND LEARN Patients’ sharing detailed health Patients’ find other patients like e Patients learn about treatment data is what makes our communities them to learn what options are options and what to expect from special. Patients learn from each available for treatment. Patients then each in our Treatment and other through sharing of traditionally share information with their health th Symptom databases private data care team
Eurordis 2009 9 Stephen Heywood (alsking101) )
Eurordis 2009 10 Finding a “patient like me” is important!
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0 1 2 3 4 5 6 7 8 9 10 11 Time (Years)
Eurordis 2009 11 First Patientt Registered Est. US Patients Prev. (%)
Amyotrophic Nov 2005 3,480 30,000 Lateral Sclerosis (12%) Multiple Sclerosis Mar 2007 11,900 500,000 (2%) Parkinson’s Mar 2007 3,500 500,000 Disease (0.7%) HIV/AIDS Sep 2007 2,200 1,000,000 (0.2%) Mood Disorders Feb 2008 9,700 20,000,000 (0.05%) Progressive Sep 2008 53 10,000 Supranuclear Palsy (0.5%) Multiple System Sep 2008 188 25,000 Atrophy (0.8%) Devics NMO Sep 2008 112 15,000 (0.7%) Fibromyalgia Nov 2008 3,200 7,000,000 Euro(0rdis.0 20509% ) 12 Contents
§ Background
§ Capabilities
§ Research
§ Business model
§ Discussion
Eurordis 2009 13 “Given my status, what is the best outcome I can expect to achieve, and how do I get there?” ”
Eurordis 2009 14 “Given my status, what is the best outcome I can expect to achieve, and how do I get there?” ”
Eurordis 2009 15 “Given my status…”
§ Demographics § Disease history § Genetics § Primary disease measure ure – Pathology – Function § Secondary disease measures – Symptoms – Wellbeing / HRQOL
Eurordis 2009 16 “Given my status, what is the best outcome I can expect to achieve , and how do I get there?” ”
Eurordis 2009 17 “…what is the best outcome I can expect to achieve…”
§ Patient Search (outliers) § Contextual data (%iles)
Eurordis 2009 18 “…what is the best outcome I can expect to achieve…”
A4V mutation
D90A mutation
Eurordis 2009 19 “…what is the best outcome I can expect to achieve…”
Eurordis 2009 20 “…what is the best outcome I can expect to achieve…”
Anxiety vs MS severity
Eurordis 2009 21 “Given my status, what is the best outcome I can expect to achieve, and how do I get there?” ”
Eurordis 2009 22 “…and how do I get there? ”
§ Treatment reports § Forum posts § Analytics
Eurordis 2009 23 Treatment Reports
Eurordis 2009 24 Treatment Evaluations
Eurordis 2009 25 Adverse Event Reporting
Pilot launched MidFebruary in MS
13 events submitted to FDA (20% of reports started) tarted)
Starting to code with MEDRA
Eurordis 2009 26 Mapping: Find a Patient Near You
Eurordis 2009 27 Contents
§ Background
§ Capabilities
§ Research
§ Business model
§ Discussion
Eurordis 2009 28 Our Dedicated R&D team commands scientific expertise in many areas
World Class Institutions Widely Published • Harvard Medical School • 60+ publications in peer reviewed journals including: • Yale New England Journal of • MIT & MIT Media Lab Medicine, Neurology, Proceedings of the National • King’s College London Academy of Sciences, • Sloan – Kettering Cancer Center Archives of Internal Medicine, Medical Care, Medical • Rutgers Decision Making, AIDS…DS…
Recognized Expertise Thought leaders • Animal models of drug • TEDMED discovery • Director’s Lecture, NIH • Psychological consequences of movement disorders • BOT @ AMA • Interactive web design • Milken Global Conference • Genetic discovery • MGH Grand Rounds • Predictive modeling Diverse & Complementary Integrated Responsibilities • Drug discovery • Community design • Psychology • Survey design & research • Sociology • PRO development • Genetics • Academic collaborations s • Nursing • Health data integrity
Eurordis 2009 29 Published Research Findings: Measuring function in advanced ALS: Validation of ALS FRSEX extension items
§ ALS patient noticed ALSFRSR wasn’t sensitive enough to capture function in advanced ALS, “floor effect” of measure § 200+ patients participated in study to construct and pilot a new, more sensitive instrument § 3 new items were selected to be included in the standard ALSFRS measure § Published, in use in ALS research around the world
Eurordis 2009 30 Published Research Findings: ALS patients request more information about cognitive symptoms
§ Forum post: “How of the time 90% many of you have ALS patients are told about noticed a change in possible physical symptoms your personality? How many of you have 10% of the time become more difficult, ALS patients are told about stubborn?” possible cognitive symptoms § Survey on disease knowledge sent to 250 ALS patients, 90 caregivers § Despite widely known cognitive dysfunction in ALS, patients were not being warned by their doctors § Published in European Journal of Neurology
Eurordis 2009 31 Publication Pending: Pathological Gambling amongst Parkinson’s Disease and ALS patients in an online community (PatientsLikeMe.com)
§ Forum post: “I am spending a lot of money that I should not spend. I wake up thinking about the lottery… It all started 13% of Parkinson’s 3% of ALS patients after starting to take patients report pathalogical gambling Requip and Stalevo. report pathalogical gambling compulsions Help me before I compulsions spend all of our little savings.” § 400+ patients from ALS & PD recruited for study of pathological gambling § Publication accepted in Movement Disorders
Eurordis 2009 32 Peerreviewed Publications
§ Pathological Gambling amongst Parkinson's Disease and ALS patients in an online community, Movement Disorders. 2009; (In press)
§ Measuring function in advanced ALS: Validation of the ALSFRS R extension items, European Journal of Neurology y 2009;16(3):3539
§ PatientsLikeMe: Consumer Health Vocabulary as a Folksonomy AMIA Proceedings;2008;6826
§ ALS patients request more information about cognitive symptoms.s. EurJNeurol. 2008;15(5):497500.
§ Social uses of personal health information within PatientsLikeMe, an online patient community: what can happen when patients have access to one another’s data, J Med Internet Res. 2008;10(3):e15
§ Excessive yawning is common in the bulbaronset form of ALS, Acta Psychiatrica Scandinavica. 2007;116(1):76
Eurordis 2009 33 Can Patients Answer Clinical Questions?
Eurordis 2009 34 Timeline from first discussion
PNAS Article Published Patient requests additional functionality 1st Post ‐ link to Italian Lithium tool goes live article w/ Google translation
Eurordis 2009 35 A patientlead trial of lithium um
Eurordis 2009 36 Our findings…
N=134 Lithium (start) N=134 Matched Controls R
S FR
S L A
Months on Lithium
Eurordis 2009 37 Probability models for key disease events s
Eurordis 2009 38 Contents
§ Background
§ Capabilities
§ Research
§ Business model
§ Discussion
Eurordis 2009 39 Business model – How we make money
§ Forprofit company allows faster growth, greater focus and sustainability § Completely transparent to all users § Access products – Clinical trial access – Market research – Forum keyword monitoring § Data products – Clinical research – Longitudinal partnerships – PatientsLikeMe University § Community development partners pharma / insurers / med device manfacturers § Typically multimillion $ engagments
Eurordis 2009 40 Community development planning
§ Developing a new community – Define, Research, Innovate, Visualize, Execute (DRIVE) – ~3 months lead time to soft launch – Choosing/developing patient reported outcome measures – Developing visualization – Engaging thought leaders & patients Patient Org Pharma – Accomplishing client goals § Patient organization provides design input, patient referrals; gets improved service for patients, data as needed § Pharma provides funding; gets PR, direct line to patient voice, data for marketing / EBM groups, competitive advantage
Eurordis 2009 41 Eurordis 2009 42 Eurordis 2009 43 Lessons & pitfalls for Health 2.0
§ “If you build it, they will come”? – Not true. A lot of possible communication channels for patients; Facebook, Yahoo Groups, Ning, blogs, etc. § Online ≠ Free. – Forum moderation, advertisement, new content, insurance / legal, maintenance / security, upgrades, hosting § Online champions are hugely influential across multiple channels – Devic’s NMO community because of 1 patient – BobbyB in ALS § “Official” information is best? – Dynamic, warts n’ all data > static, approved, unrepresentative data § Online data collection is being taken more seriously – Fewer barriers to publication than anticipated ed
Eurordis 2009 44 The future we’d like to see…
www.patientslikeme.com [email protected] m Eurordis 2009 45