PLM Data Capabilities Overview June 2014

Transcription

1 PLM Data Capabilities Overview June 2014

2 Our focus at PatientsLikeMe Help individual patients achieve better outcomes and live better, together Improve healthcare with real-world data that helps people invent more effective treatments, make more informed care decisions, and better align with the actual needs of patients 2

3 What members do Learn about living with and treating life-changing conditions Connect with others sharing those experiences Track their history and progress over time Answer the question Is this normal? Learn from aggregated patient treatment and symptom data Search patients based on age, gender, disease, treatment, symptoms, interests, etc. Day-to-day support Live better, together Document changes to symptoms and new treatments, triggers and side effects Generate a real-world outcomes research data 3

4 Listening to the community The community team uses high touch moderation and connect with each new member to intimately know the community and foster engagement. How do they listen to and engage with the community? Reading all forum threads to monitor, identify, and categorize content Welcoming new members Monitoring trends with tags, a tool used to categorize discussions in the forum Sharing relevant news, research summaries, and blog posts What do they look for in a "quality" forum thread? Threads where members are: Getting their disease questions answered Finding social support they need Sharing their experiences Topics which come up again and again, generate quality replies, and have longevity to them 4

5 Real patient benefit to tracking I'd say a quick look at my profile will give you enough info on what happens when you stop your meds. PatientsLikeMe HIV Community member Patient experienced increases in viral loads and decreases in CD4 count OPPORTUNITY: Medical Adherence Program Patient went on a drug holiday 5

6 Types of Data On PLM Profile data entered by patients at will o Structured data e.g. Condition history, PRO o Unstructured data e.g. forums, comments o Web-logs e.g. clicks, time on site Survey data gathered via Research Survey Tool o Open text o Multiple choice o Profile pull-through (basic info) o External pull-through (EQ5D) PROPRIETARY & CONFIDENTIAL 6

7 Profile: Symptoms (MS example) Measurement of symptom severity across general and disease- specific symptoms. Members may also add other symptoms not otherwise present for their condi;on. June 25, 2014 PROPRIETARY & CONFIDENTIAL 7

8 Profile: Outcome report (MS example, MSRS) A pa;ent- reported outcome which measures disease severity, progression, or func;onality disability. Outcome scales are disease- specific and may be tracked longitudinally. June 25, 2014 PROPRIETARY & CONFIDENTIAL 8

9 Diseases with outcomes on PLM - Multiple Sclerosis - Multiple Sclerosis Rating Scale (MSRS) - Pulmonary Fibrosis - Pulmonary Fibrosis Severity Score - Fibromyalgia / Chronic Fatigue Syndrome - Pain and Fatigue Rating Scale (PFRS) - Epilepsy - Seizure Survey - ALS - Functional Rating Scale (FRS) - Parkinson s Disease - Parkinson s Disease Rating Scale (PDRS) - Psoriasis - Dermatology Quality of Life Index (DLQI) - Multiple System Atrophies, Progressive Supranuclear Palsy - Movement Disorder Rating Scale - Autism Spectrum Disorder - Autism Treatment Evaluation Checklist (ATEC) - Neuromyelitis Optica - Neuromyelitis Optica Rating Scale (NMORS) June 25, 2014 PROPRIETARY & CONFIDENTIAL 9

10 Treatments (for all conditions) Types of treatments members are able to report on, including Rx, OTC, and others. June 25, 2014 PROPRIETARY & CONFIDENTIAL 10

11 Treatment histories (for all conditions) A series of ac;vi;es members may engage on when adding, con;nuing, or discon;nuing treatments. June 25, 2014 PROPRIETARY & CONFIDENTIAL 11

12 Labs & Tests (for all conditions) Members are able to choose labs and tests they have undertaken as part of their care journey. Over 200 labs and tests are currently available, and the number con;nues to grow. June 25, 2014 PROPRIETARY & CONFIDENTIAL 12

13 Top 30 labs currently collected by PLM June 25, 2014 PROPRIETARY & CONFIDENTIAL 13

14 Data challenge: The Funnel A narrowing funnel between sample and interest Harder ques;ons to answer Total Worldwide Popula;on (for a condi;on) PLM Popula;on PLM US Popula;on Has Symptom of Interest Reports Symptom of Interest Severity Criteria The popula;on of interest for a specific research ques;on Proprietary & Confidential 14

15 Custom Project Offerings Using Profile Data Database Analysis o Use of existing patient structured profile data to answer research questions Qualitative Studies o Mining of existing forum (unstructured) data 15

16 Profile Data Analyses Objective: Gain a better understanding of a patient s disease; disease impact, patient beliefs, as well as any other aspect of the patient disease experience. Brief Description: Structured and/or unstructured data previously entered by patients is collected and curated into a data set for analysis. Raw data and basic PLM analyses are made available; additional analyses by research partners encouraged. Publication and conference presentation of results is encouraged. Logistics: Fields included in data set are identified, and estimate of data completion made IRB review is sought by PLM Typical timing of completion is 6-8 weeks, dependent on analysis plans Patients are not paid to participate Brief Project Concept Examples: - Examine pattern of pain severity across multiple conditions before and after treatment - Search patient forum conversations for unmet support needs in diabetes care Proprietary & Confidential

17 Custom Project Offerings Using Supplemental Data Research Surveys o Field questions to patients through the Research Survey Tool Instrument Development o Development and psychometric validation of patient-reported outcome tool 17

18 Supplemental Research Surveys Objective: Gain a better understanding of a patient s disease; disease impact, patient beliefs, as well as any other aspect of the patient disease experience. Brief Description: Targeted survey to an active cohort of PLM patients. Survey is authored by PLM and researchers. Upon survey completion, raw data and basic PLM analysis are made available. Publication and conference presentation of results is encouraged. Logistics: Typical surveys are ~50 items Longitudinal, cross-sectional, or conjoint formats supported IRB review is sought by PLM Typical timing of completion is weeks Patients are not paid to participate Surveys are always co-branded Brief Project Concept Examples: Survey patients about the presentation and impact of nausea in patients receiving anti-cancer agents HEOR analysis of the impact of improved walking in MS Patients beliefs and hopes about treatment risks and benefits Proprietary & Confidential

19 PRO Instrument Development Objective: Quickly and efficiently design, create, and test patient-informed outcomes tools that better measure a patient s experience with their disease, treatment, and its impact on their life Brief Description: Fielding of patient reported outcome measures on PLM s Open Research Exchange Platform in three phases: 1) Concept Elicitation, 2) Feedback, 3) Test/ Retest. Measure is authored by PLM and researchers. Raw data from each phase, as well as completed PRO tools are made available. Logistics: Typical timing of completion (phases 1-3) is weeks It is not always necessary to undergo all three phases Patients are not paid to participate PROs are always open source and stored in the ORE library of patientreported instruments IRB review is sought by PLM Brief Project Concept Examples: Gain patient feedback on existing PRO language for the measurement of treatment burden, and generate an improved version Create and gain patient feedback for a PRO measuring medication adherence in Multiple Sclerosis Proprietary & Confidential

20 PatientsLikeMe publications More than 40 disease specific and general scientific research publications; please see the cumulative bibliography for citations 20

21 Emil Chiauzzi PhD Research Director, Client Services 21