empowerment - trefpunt zorg · 2017-03-14 · patient empowerment through social media tuesday 30th...
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Patient EmpowermentThrough social media
Tuesday 30th of September 2014
Mitchell SILVA, PhD
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Trend in internet use
10/3/2014 2
More and more people use technology to go to the Internet
Why are social networks important for patients?
Get more precise information about diagnosis & treatment
Share & get advice to/from other patients
Get support
Get empowered:
scientific studies clearly show that empowered patients (w/o cancer) have a better
survival compared to normal patients.
e-Patients want to play an active role in their life and in the management of their
disease!
10/3/2014 4
Social Media: also for physicians?
10/3/2014 5
More and more doctors and hospitals use Social Media
Hospital perspective - why?
– Communication channel to patients
– Patient Empowerment
– Activated patients are
• better to understand their medical procedures,
• have better functional status and satisfaction,
• are more likely to perform self-management behaviors,
• report higher medication adherence rates
Cancer Patient
Community
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Dr. Erard le Beau de Hemricourt• Medical Doctor in Nuclear Medicine• Medical author
Dr. Mitchell Silva• Doctor in Bio-Engineering• Empowered lung patient
Esperity
Founded in September 2012
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Partnerships
10/3/2014 9
Advisory Board
10/3/2014 10
Prof Martine PiccartJ Bordet Institute
Prof Dominique BRONJ Bordet Institute
Prof Gerald BATISTMcGill University
Prof Marc HamoirCliniques Univ. Saint-Luc
The Future of Cancer Treatment
50% of cancer can be
PREVENTEDQuality of Life
SURVIVORSHIPBiomarkers for
TARGETED
THERAPY
50%
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The Future of Cancer Treatment
PATIENT EMPOWERMENT
&
Crowdsourcing Data
50%
12
Vision
Mapping Genetic Information on Dynamic Patient Data will lead to new insights on the relation between
Quality of Life and Treatment Outcome
Information and
education
Track patient health
Perform Research
Body Area Networks/sensors included
13
14
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Our solution
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Secured Web Platform
News & ForumFind SupportTrack your condition
Social
Find other people like yourself
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Participate in Communities
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QoL and
Symptoms
Quality of Life
21
Adverse Events
22
Questionnaire
Questionnaire
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Adherence
Adherence
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Adherence
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Extensive database
250 cancer types
300 genetic abnormalities
800 anti-cancer drugs
(+ synonyms)
30 Specific questions per cancer 1400 side effects
1000 other drugs
(+ synonyms)
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Clinical Trials
Module
Clinical Trials Module
Cancer Patients Clinical Trials• 3% of all patients in clinical
trials• 97% standard care :• Missed opportunity
(patients & pharma)
Patient enrollment: the most time-consuming aspect of the clinical trial process
InformationAwareness
What influences patient recruitment?
Clinical Trials Module
Cancer Patients Clinical Trials
Extra Feature
Extra Feature
Select open Clinical Trials
Information
Get Informed
InformationAwareness
Become Aware
Select Cancer Type
Select a Trial
Get Information
Show your interest
Select a Trial
Boosted trials
Show your interest
Show your interest
Confirm your interest
Confirm your interest
We will contact you!
Going further…
Semantics AnalysisAnalyzing user stories to perform sentiment analysis
Data Visualization toolsReporting tool for studies andPlatform management
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>3000 subscribers since launch
March April May June
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Privacy
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Data Privacy
• Submitted to Privacy Commission
• Informed consent: allow to capture data for research purpose
• De-identification of data: anonymization techniques (third party)
• No real name, no real address is acquired
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Also a research focus!
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Careware
The CareWare project aims to develop and leverage novel unobtrusive cyber physical systems for monitoring and advancing personal health and wellbeing.
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Value Chain
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Value Chain
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Research Goal for Esperity
Hypothesis: “Lifestyle can be quantified and linked with treatment outcome”
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Research Goal
Development of a model to quantify medication impact based on objective parameters from sensors (body area network) in combination with reported outcomes.
Quality of Life
Sensor Type & Position
Data processing
Context
Medication Impact
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Medication
Nutrition
Activity
PATIENT
Genetics
Environment
Lifestyle Treatment Outcome
Health Parameters
Sensors
Medication
Health Parameters
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Lifestyle and Quality of Life• How to define lifestyle?
– No clear definition
– Lifestyle is related to Quality of Life and wellbeing (physical and mental condition)
– Quality of life: validated questionnaires in clinical settings (QOLS , WHOQOL-BREF , QOL30 , Fact-G) but not in real life situation
– Objective measure of lifestyle using sensors: how?
– Sensors give data: define what parameter in data is relevant
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Info: mitchell@esperity.com
Thank you!
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