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DayOne Experts
30. October 2019, Basel
Patient Centricity - what does
it mean and how is it done?
Thomas Brenzikofer, Co-Founder DayOne
BaselArea.swiss
#DayOneBasel
An initiative managed by BaselArea.swiss
in close collaboration with
the Canton of Basel-Stadt.
5
A growing community of 1500+ healthcare innovators
DayOne Core Team & Management
Michael Rebhan, Novartis
Peter Groenen, Idorsia
Alain Bindels, Roche
Torsten Schwede, University of Basel and Swiss Institute of Bioinformatics
Christian Elias Schneider, University of Basel
Andreas Wicki, Bram Stieltjes University Hospital Basel
Nicole Probst-Hensch, Melissa Penny, Swiss TPH
Erik Schkommodau, Enkelejda Miho, School of Life Sciences FHNW
Christian Bosshard, CSEM
Laurenz Baltzer, KARGER
André Moeri, Medgate
Rocco Falcetto, Patient
Andrea Huber Brösamle, Niko Beerenwinkel, ETH DBSSE
DayOne Team @ BAS:
Frank Kumli
Fabian Streiff
Thomas Brenzikofer
Douglas Häggström
Stefano Glauser
Mariela Salas
Adrian Sprenger
Supporters:
Bhupinder Bhullar
Viktor Bullain
Aurelie Moser
Egle Thomas
Bejal Joshi
DayOne Partners
MANAGED BY
SUPPORTING PARTNERS
KNOWLEDGE PARTNERS
IN CLOSE COLLABORATION WITH
8
Vision
Create a world leading hub for healthcare innovation,
built on the strength of the Basel region
respected for its impact facilitating collaboration
across disciplines and industries
with a focus on precision medicine – the convergence
of diagnostics, treatment and digital health
25
26
Co-Host
Mark Dangel
Agenda
18.15 Welcome and Introduction
18:30
Presentations by:
Industry Perspective: Gurmit Sandhu, Patient Engagement Specialist
Entrepreneur’s Perspective: Nora Zetsche, Veta Health
Science Perspective: Johannes Mosbacher, School of Life Sciences, FHNW
Patient’s Perspective: Mitchell Silva, www.patientcentrics.com
Technology Perspective: Laurie Riguccini, Soladis
19:20
Panel discussion with speaker and audience
20:00 Wrap-up and networking with refreshments
Main Stakeholders
Pharma
HCP
PayorTech
Gov/Reg
Patient Centricity
Pharma
HCP
PayorTech
Gov/Reg
Pharma
HCP
PayorTech
Gov/Reg
Ecosystem
Pharma
HCP
PayorTech
Gov/Reg
Patient’s Interaction
Pharma
HCP
PayorTech
Gov/Reg
Patient’s Interaction
Pharma
HCP
PayorTech
Gov/Reg
Patient’s Interaction
Pharma
HCP
PayorTech
Gov/Reg
Patient’s Engagement
Pharma
HCP
PayorTech
Gov/Reg
Patient’s Engagement
Presentations
Industry Perspective:
Gurmit Sandhu, Patient Engagement
Specialist
Patient
Engagement:
It’s a “verb”
Asking for
better
standard of
care*
Societal movement within a commercial, regulatory,
methodology, reimbursement, science & technology
framework 1
Perspectives are important
Patient Relevant Outcomes & Information
Basel DayOne Experts - Patient Centricity Oct 2019 38
Commentary & Agenda
* Patient Engagement, Citizens` Rights
1. medicines life cycle
Clinical and Patient Relevant Outcomes
Patient
Relevant
Outcomes 2
Clinical
Outcomes 1
39Basel DayOne Experts - Patient Centricity Oct 2019
1. Focus of clinical trails. Used to calculate sample size.
PROs Patient Reported Outcomes surveys are often
secondary outcomes in these trials.
2. Focus of Disease Burden reports.
Patient Relevant Outcomes: Overview
Physical, practical, social, emotional & others (fatigue, sleeplessness)
40Basel DayOne Experts - Patient Centricity Oct 2019
Patient Relevant Outcomes
& Information Needs
Aspects Examples 1
Practical
 Sporting activities
 Social opportunities
 Relationship & intimacy
 Travel, insurance, etc
Physical
 Activities of daily life
 Work & income
Social
 Narrowing of social roles
 Feeling excluded & isolated
Emotional
 Feeling frustrated
 Misunderstood
 Depressive & low
41
1. Guillevin L et al . Understanding the impact of pulmonary arterial hypertension on patients’ and carers’ lives.
Eur Respir Rev 2013;22:535–542
Other considerations Examples 1
 Improved dialogue to ask
for
a better standard of care
 At diagnosis
&
several stages,
post diagnosis
 Stagger & repeat topics
of
information according to
needs
Basel DayOne Experts - Patient Centricity Oct 2019
Schematic of PROs used in clinical research 1
PROs = Patient Reported Outcomes Surveys (validated tools, surveys & questionnaires).
General vs Disease specific PROs .
42
1 Mckenna S BMC Medicine 2011 9:86.
2 Patrick DL, et al Patient Reported Outcomes Methods Cochrane Review Group.. Cochrane Handbook for Systematic Reviews ofnterventions. Version 5.1.0. 2008
3. Mckenna S The Limitations of Patient-Reported Outcome Measurement in Oncology. Journal of Clinical Pathways. Sep 2016
Quality of life QoL, primary outcome
of relevance & importance to
patients.
Health related quality of life HRQL
Patient-reported outcomes (PROs) have been defined as “a report coming directly from patients about how they feel or
function in relation to a health condition and its therapy without interpretation by healthcare professionals or anyone else 2, 3.
Patient Satisfaction.
Care, Comfort &
Confidence. Often,
a focus of Health
Care Institutions
Basel DayOne Experts - Patient Centricity Oct 2019
Patient Generated Index vs Clinical Outcomes:
Multiple Sclerosis Case study
Domain Proportion of MS subjects reporting
Problem N (%)
School/Work 114 (62)
Fatigue 88 (48)
Sports 73 (39)
Social life 52 (28)
Relationships 43 (23)
Walking 41 (22)
Cognition 39 (21)
Balance 25 (14)
Housework 23 (12)
Mood 21 (11)
43
Ambulation
Table 1. Kuspinar & Mayo. Health and Quality of Life Outcomes 2013,11:71
The sample was relatively young (mean age 43) and predominantly female. Both men and women had mild disability with a median
Expanded Disability Status Scale (EDSS) score of 2.
Basel DayOne Experts - Patient Centricity Oct 2019
Patient & People Engagement: An Illustration 1
Patient Relevant Outcomes & Information. From Patient to People Engagement
Basel DayOne Experts - Patient Centricity Oct 2019 -
www.gurmitsandhu.com E: gurmitsandhu97@hotmail.com
44
Clinical
Relevant
Outcomes
Patient
Relevant
Outcomes
Value (HTA, payer reimbursement, etc)
Care,
Comfort
&
Confidence
Health
Literacy
&
Beliefs.
Trust
&
Respect.
Medical
Informatics:
Omics*
&
Technologie
s
Patien
ts
Health
Care
Institutions
HTA Health Technology Assessment
RCTs = Randomized Clinical Trials. RWD = Real World Data
*Omics includes genomics, proteomics, transcriptomics, metabolomics, interactomics,
phenomics, behaviouromics, expressomics, CHOmics, etc. 1. medicines life cycle.
Medicines life
cycle
“New Tribe”
Presentations
Entrepreneur’s Perspective:
Nora Zetsche, CEO Veta Health
Happy, Healthy Patients
CARE DELIVERY MUST GO
BEYOND TRADITIONAL
CARE SETTINGS
WE BELIEVE
Care must move
“Between and Beyond”
Healthcare organizations must meet consumers where
they are at, with experiences that they have been taught
to expect...
Consumerism in healthcare
EVOLVING LANDSCAPE OF THE PATIENT JOURNEY
Identification - Reactive Care
“Personalized
Medicine”
Marketing and
Population
Health
Management/
Engagement
Identification &
Stratification
Care Teams,
Care
Managers,
Health Kits
StrategicImpact
Level 2
Level 3
Level 4
Level 5
Level 1
Engagement and Impact
Value
2012 - 2013 2018-2020 2020-2024 2024-2030
Patient and
Family
Engagement,
Process
Improvement,
Care Team
Depth and
Breadth...
All Patients
“Before and
After”
Engagement and Proactive Care
Head & Neck
Cancer (Rabbit)
Pre-Injection 5 min 24 hours 4 days
Patient
Guidance
Status
Checks, Monitoring &
Surveys
Adherence & Side
Effect Tracking
Family
Engagement
Info/ Support
Resources
Insights Dashboard
for clinical teams &
stakeholder
✔Multi-Channel engagement
✔Wearable Integration & Survey Engines (PRO & Patient-Generated Data collection)
✔Automated Responses based on patient reported data
✔Clinical Guidance & Education
✔Stakeholder Dashboard for longitudinal treatment insights
THE VETA HEALTH SOLUTION
Greater understanding of self-
treatment and therapy to drive
adherence and pos. outcomes
Strengthen relationships and trust
between patient and care
stakeholders
Therapy specification and
outcome optimization
THE VETA HEALTH BENEFITS
Miami
New York
Boston Berlin
Automated, responsive care pathways for the spaces between and beyond traditional care settings
35K All-time users
40-80% Compliance to protocols
Software Partner:
3 data points/day Average Engagement
70% Patient Satisfaction Increase
VETA HEALTH
4.2M Questions answered
Veta Health
78% readmission rate reduction for 30-day
CHF readmissions
75% readmission rate reduction for all-cause
readmissions
14% of captured data points lead to
interventions
82% resulted in patient health improvement
94% average medication compliance
70% increase in patient satisfaction
American College of Cardiology (ACC) first place
winner!
Veta Health
CASE STUDY: CONGESTIVE HEART FAILURE
Before
After
Percent of Patients with Well-Controlled
Asthma
(ACT Score ≥ 20)
54%
71%
Before
After
ED Visits per Year
(p-value <0.05)
0.2
0.1
Before
After
Missed School Days per Month
(p-value <0.05)
1.6
0.4
17%
Improvement
50%
Reduction
75%
Reduction
Significant improvement
in asthma outcomes
and management
ASTHMA RESULTS
N = 217 patients (before vs. after)
https://unsplash.com/photos/WHYHfmBuCB4
Demand
Quality
THANK YOU
For more information, visit myvetahealth.com
Presentations
Science Perspective:
Johannes Mosbacher, Professor
School of Life Sciences, FHNW
Johannes Mosbacher
Professor for Precision Pharmaceuticals – School of Life Sciences, Muttenz
Patient centricity in science – old wisdom or new hype?
Idea – molecules - cells – tissue – animals –
patients
Institute of Pharma Technology
4000 years ago: medicine was fully “patient-centric”
Traditional Chinese Medicine is based on millions of human trials
Huang Di (the Yellow
emperor, ca. 2600 AC): The
Canon of Internal Medicine
(compiled 300 AC)
Feel sick
Eat plant
Eat another Medicine!
Feel
Worse
Feel
Betterhttps://www.wikipedia.org
12.11.2019 60
12.11.2019Institute of Pharma Technology 61
Today, most scientific approaches start from “molecules”
Science needs to reduce complexity to understand a system
„Understanding the molecular
dysfunction opens ways to
therapies“
https://pixabay.com/
„A patient is a human being with a
cellular or molecular dysfunction
that impacts her/his health-related
quality of life“
12.11.2019Institute of Pharma Technology 62
From narratives to case studies to a congruent picture
Big Data helps today´s scientists to re-enter into the area of “whole-system-science”
https://pixabay.com/
12.11.2019Institute of Pharma Technology 63
The Swiss Personalized Health Network
Enabling Big Health Data Research
https://www.sphn.ch/dam/jcr:ba06080c-06fe-443f-916e-43e59cedbe30/SPHN%20Review%20Fact-Sheet%202019.pdf
12.11.2019Institute of Pharma Technology 64
Pharmacogenetic tests in a dish
Precision Medicine with “blockbuster drugs”
http://dmd.aspetjournals.org/content/47/6/632
https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(19)31276-0/fulltext
Presentations
Patient’s Perspective
Mitchell Silva
www.patientcentrics.com
Patient Centricity:
the patient perspective
Mitchell Silva, PhD
Patient Centrics
My Story
My Story
Eosinophilic Asthma
Self-monitoring and education
Participation in a clinical trial
In search for an alternative
treatment
• Very controlled and supported environment
to adhere to treatment
• Clear goal
• Perceived control by taking actions and having the
tools to track
• Learn more about my disease
Where could things
go better?
Recruitment Trial Post-Trial
Where could things
go better?
• Lack of awareness
• Where to go?
• What questions to ask?
• Do I understand?
• Awareness campaigns
• Communities
• Patient Guidance
• Understandable IC’s
Format IC’s
Recruitment Trial Post-Trial
Where could things
go better?
• Lack of awareness
• Where to go?
• What questions to ask?
• Do I understand?
• Awareness campaigns
• Communities
• Patient Guidance
• Understandable IC’s
Format IC’s
Recruitment Trial Post-Trial
• Missed appointments
• Badly prepared
• PDA not working
• Motivation (heavy trial)
• Shared calendar
• How to prepare guide /
visit (checklist)
• Apps on own device
• Support during trial
Where could things
go better?
• Lack of awareness
• Where to go?
• What questions to ask?
• Do I understand?
• Awareness campaigns
• Communities
• Patient Guidance
• Understandable IC’s
Format IC’s
Recruitment Trial Post-Trial
• Missed appointments
• Badly prepared
• PDA not working
• Motivation (heavy trial)
• Shared calendar
• How to prepare guide /
visit (checklist)
• Apps on own device
• Support during trial
• What next?
• What are my results?
• Can I have my data?
• Am I excluded from
other trials?
• Thank you
• Share latest (public)
trials results
• Guide to help patients
after a trial
Where could things
go better?
• Lack of awareness
• Where to go?
• What questions to ask?
• Do I understand?
• Awareness campaigns
• Communities
• Patient Guidance
• Understandable IC’s
Format IC’s
Recruitment Trial Post-Trial
Understanding the patients’ needs and the barriers to
participate to optimize trial designs, informed consent
forms and protocols,… , but more than that…  beyond
trials
Where could things
go better?
Simple changes with
big impact
Simple changes with
big impact
What
Disease Area Strategy Study phase (pre-, during, post-) HTA (risk – benefit) Disease management and PSP
• Define unmet needs
• Define relevant added
value and outcomes
• Understand disease
burden
• Burden of participation
• Procedures and visits
• Endpoints
• PROMs
• Benefit/Risk
• Patient information
• IC
• Practical considerations
• Lay summaries
• Future research
opportunities
• Patient Value
assessment
• Patient priorities
• Patient relevant
outcomes
• Disease management tools
• Patient Support Programs
• PREM/PROM in real world
• Patient information
• Awareness
TPP
Impact on patient
Current patient involvement
How
• Mission and roadmap
• SOPs  global vs local
– Interacting with patients (+ type of patients)
– FMV
– Internal Evaluation forms  KPIs
• Create ecosystem that facilitates
Patient Engagement
– Know your POs
– Education of PE
• Be aware of context, dynamics, patient
profiles
How
Patient Expert
Patient Advocate
Lay Patient
Challenge yourself:
• Don’t take the patient perspective as granted
• Validate your assumptions
• Train yourself
• Become an ambassador and inspire
• Create (more) patient value (faster), patients are
waiting
Make it
Happen !
Patient
Centricity
Thank you
Mitchell@patientcentrics.com
Presentations
Technology Perspective:
Laurie Riguccini, Soladis
®
or how to involve the patient in their health and wellness
Laurie Riguccini
DayOne Experts | Patient Centricity 30/10/2019
SOLADIS
Patient centricity from a technology
point of view
Evimeria®: our solution to monitor
your health and wellness
Main challenges:
o How to prove the benefit
of the app?
o How to make itmeaningful
to the users?
o How do we get thegeneral
indicators?
Open questions
Copyright © SAS Institute Inc. All r ights reserved.
SOLADIS Digital
SOLADISDigital
Soladis Digital is a leading player in DataViz, Data
Sciences, Big Data and Business Intelligence projects
aiming to address the issues of health & life science
industry.
Years of experience strengthened our skills which
enable us to answer extremely varied needs and
challenges, and very specific requirements.
Whether those challenges have to be faced with a
full time consulting or throughout a short-time
project, Soladis Digital gives you the opportunity to
empower your data with information to reach your
goals : to explore, to understand or to demonstrate.
Businessunderstanding
• Context & scope
• Objectives, success criteria
• Inventory of available resources (workforce,IT)
Data understanding
• Data Collection
• Description andExploration
• Quality control
Datapreparation
• Useful data / Commonbase
• Data Cleansing, DataWareHousing
• Data management, consolidation
Datamodeling
• Define and analyze the data according to businessobjectives
• Statistical modeling, algorithms and tests
• Model evaluation
IT deployment
• IT Architecture, Design, Installation, Configuration, Validation
• Deployment, Management and Securityrules
• Reporting, DataViz, Mobile app
ID Methodology
Innovative projects
• Chronic and Acute StressIdentification :
• The combination of our innovative sensors giving access to precise physiological variables, and algorithms of
machine learning/artificial intelligence allow us to set up a secure and anonymous app (with integrated Chabot) to
follow and identify stresstype;
• Sleep Quality:
• Disturbances in night breathing cause poor sleep quality with frequent nocturnal awakenings (conscious or unconscious)
and increase significant clinical manifestations. We defined a technique to industrialize subject's sleep information. The
application allows the subjectto distinguish between different typesof sleep apnea, in pre-diagnostic mode;
• Aging In Place:
• Support and increase existing alert initiatives by providing innovative solutions for anticipating and assessing the ability of
subjects to be able to stay at home. Our solutions are based on artificial intelligence algorithms and applications based on
the recognition of elderly behaviors with connected services in home e-health sector;
EVIMERIA® Innovation
• Evaluation of the probability of a cardiovascular complication:
• The 6-minute walk test (6MWT) is a test exercise tolerance in chronic respiratory disease and heart failure. Our
solution allows a digital synchronization and continuous recording data (SPO2, heart rate, speed) during the walking
test and to derive new indicators to evaluate the probability of cardiovascular complication;
• What Next ?
• Epilepsy: Cardiac rhythmdisorders during epileptic seizures,
• Alzheimer, Parkinson,
• Depression,
• Environment management,
• …
It is relevant to consolidate our technical efforts and information obtained and health issues addressed in a
single tool → We need to create a Health & Well-being platform
EVIMERIA® Innovation
Health and Wellness platform
Sensors
DataAcquisition
Transfer
DataViz
Data Quality
DataManagement
Analytic
Machine Learning
Artificialintelligence
Quality of sleep
Cardiac Functional Capacity (eMWT)
Stress identification
Aging In Place
...
Mobile App
Web
DesktopApp
Chabot
Integration and completionof
operational data
OUR PLATFORM DEDICATED FOR HEALTH AND WELLNESS
Quality of sleep
Cardiac Functional Capacity (eMWT)
Stress identification
Aging In Place
...
Life QualityWhy Use Evimeria:
1. To collect data in real life (Real Life Data) and analyzeit
2. To follow the quality of life ofsubjects
3. Anticipate burnouts, stress...
4. Measure the quality of yoursleep
5. Impact of environment on quality oflife
6. Identify ways to support our elders in their home-basedchoices
7. Share experiences
8. Conductstudies
9. Chat with Evi
10. …
OUR PLATFORM DEDICATED FOR HEALTH AND WELLNESS
EVIMERIA® : Stress And sleep quality
The sensors
DailyStress
REMSleep
Daily Stress
Sleepquality
ChronicStress
• Measurement of the felt stress:
• Sociodemographic information
• Complementaryactivities
• Stress identification questionnaires
• Question about his personal feelings of work-related stress
• Measurement of accumulated or chronic stress:
• Respiratory synchronization test via sensors
• Monitoring ECG via sensors
• Measure of instant stress:
Decision latitude
Psychologicalrequest
Social support
Work Recognition
Emotional category
Cognitive category
Behavioral category
Somatic category
DSNA
VFC Amplitude
Cardiorespiratoryalignment
Cardiorespiratory synchronization
Cardiac frequency
• Analysis of the variability of the pulsed pressure via a connectedwatch
% of time stressed by the day
Median variability of pulsedpressure
Topics: Stress Identification
Topics: Stress Identification
Level ofstress
High
Medium
Intermediate
Low
Our Main Challenges:
1) How to create a global indicator suitable for everyone?
2) How do we encourage people to use the app?
Patient centricity: a definition
“When you get to the point when you can’t do
anything without getting a discussion with patients,
that’s when you’ve embraced the concept, for
example, you can’t write a protocol without getting
patients’ input.”
Main challenge of our health and wellnessplatform:
How do we make those global stress score and sleep quality suitable for
everyone?
we need TO KNOW the subject
Evimeria® app: the subject at the center
Our app: collecting the right information
Our app: impact of your lifestyle on your health
Patient centricity: global stress score within a stress family
Main challenge: we rely on data!
DATA
 We need enough data to improve our
models
 We need reliable data to adapt our models
to the people and best fit their habits
 A part of the data we use is coming from
survey forms (qualitative data) and inputs
from the users: we need to be able to
account for the human error
Panel discussion
Gurmit Sandhu, Patient Engagement Specialist
Nora Zetsche, Veta Health
Johannes Mosbacher, School of Life Sciences, FHNW
Laurie Riguccini, Soladis
Mitchell Silva, www.patientcentrics.com
Announcing: The DayOne Health Hack
Let’s co-create next generation health
solutions – patient driven
A patient centric hackathon
 Providing a neutral platform to explore patient-centric
innovation
 Putting Patient needs at the starting point
 Co-creating hands-on proof of concepts
• catalyzing healthcare innovation projects that can be brought
to a next stage
Help solve real world patient challenges
Tech
workshop(s)
•Enabling
capabilities
•Tech mentors
• Data sets
•Infrastructure
•...
Patient
Workshop(s)
•Collect cases
•Patient
volunteers/
challenge
owners
•Expectations
•…
Curation
• Identify
realistic 2-day
“hack”
projects
• Mentors
• Enable
Continuity
Hackathon and
Dayone conf.
•Execute
hackathon
following
principles
• “pitches” at
DayOne
• …
Impact follow
up
• Ensure
Continuity
when wished
• Projects
• Incubation
•…
Foster collaboration across silos…
Pharma HCPTech
… around patient’s needs
Pharma
HCPTech
DayOne Health Hack …
…generates seeds for patient-
centric innovation
…connects patients and software
developers
…increases engagement of
digital talent in healthcare
Pharma
HCPTech
Next DayOne Experts
December 3, Markthalle
Data-driven healthcare
– are we ready?
in close collaboration with
the Embassy of the Netherlands
and
BioData World congress

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2019.10.30 DayOne Expert Event patient centricity

  • 1. DayOne Experts 30. October 2019, Basel Patient Centricity - what does it mean and how is it done?
  • 2. Thomas Brenzikofer, Co-Founder DayOne BaselArea.swiss
  • 4. An initiative managed by BaselArea.swiss in close collaboration with the Canton of Basel-Stadt.
  • 5. 5 A growing community of 1500+ healthcare innovators
  • 6. DayOne Core Team & Management Michael Rebhan, Novartis Peter Groenen, Idorsia Alain Bindels, Roche Torsten Schwede, University of Basel and Swiss Institute of Bioinformatics Christian Elias Schneider, University of Basel Andreas Wicki, Bram Stieltjes University Hospital Basel Nicole Probst-Hensch, Melissa Penny, Swiss TPH Erik Schkommodau, Enkelejda Miho, School of Life Sciences FHNW Christian Bosshard, CSEM Laurenz Baltzer, KARGER André Moeri, Medgate Rocco Falcetto, Patient Andrea Huber Brösamle, Niko Beerenwinkel, ETH DBSSE DayOne Team @ BAS: Frank Kumli Fabian Streiff Thomas Brenzikofer Douglas Häggström Stefano Glauser Mariela Salas Adrian Sprenger Supporters: Bhupinder Bhullar Viktor Bullain Aurelie Moser Egle Thomas Bejal Joshi
  • 7. DayOne Partners MANAGED BY SUPPORTING PARTNERS KNOWLEDGE PARTNERS IN CLOSE COLLABORATION WITH
  • 8. 8 Vision Create a world leading hub for healthcare innovation, built on the strength of the Basel region respected for its impact facilitating collaboration across disciplines and industries with a focus on precision medicine – the convergence of diagnostics, treatment and digital health
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  • 27. Agenda 18.15 Welcome and Introduction 18:30 Presentations by: Industry Perspective: Gurmit Sandhu, Patient Engagement Specialist Entrepreneur’s Perspective: Nora Zetsche, Veta Health Science Perspective: Johannes Mosbacher, School of Life Sciences, FHNW Patient’s Perspective: Mitchell Silva, www.patientcentrics.com Technology Perspective: Laurie Riguccini, Soladis 19:20 Panel discussion with speaker and audience 20:00 Wrap-up and networking with refreshments
  • 36. Presentations Industry Perspective: Gurmit Sandhu, Patient Engagement Specialist
  • 37.
  • 38. Patient Engagement: It’s a “verb” Asking for better standard of care* Societal movement within a commercial, regulatory, methodology, reimbursement, science & technology framework 1 Perspectives are important Patient Relevant Outcomes & Information Basel DayOne Experts - Patient Centricity Oct 2019 38 Commentary & Agenda * Patient Engagement, Citizens` Rights 1. medicines life cycle
  • 39. Clinical and Patient Relevant Outcomes Patient Relevant Outcomes 2 Clinical Outcomes 1 39Basel DayOne Experts - Patient Centricity Oct 2019 1. Focus of clinical trails. Used to calculate sample size. PROs Patient Reported Outcomes surveys are often secondary outcomes in these trials. 2. Focus of Disease Burden reports.
  • 40. Patient Relevant Outcomes: Overview Physical, practical, social, emotional & others (fatigue, sleeplessness) 40Basel DayOne Experts - Patient Centricity Oct 2019
  • 41. Patient Relevant Outcomes & Information Needs Aspects Examples 1 Practical  Sporting activities  Social opportunities  Relationship & intimacy  Travel, insurance, etc Physical  Activities of daily life  Work & income Social  Narrowing of social roles  Feeling excluded & isolated Emotional  Feeling frustrated  Misunderstood  Depressive & low 41 1. Guillevin L et al . Understanding the impact of pulmonary arterial hypertension on patients’ and carers’ lives. Eur Respir Rev 2013;22:535–542 Other considerations Examples 1  Improved dialogue to ask for a better standard of care  At diagnosis & several stages, post diagnosis  Stagger & repeat topics of information according to needs Basel DayOne Experts - Patient Centricity Oct 2019
  • 42. Schematic of PROs used in clinical research 1 PROs = Patient Reported Outcomes Surveys (validated tools, surveys & questionnaires). General vs Disease specific PROs . 42 1 Mckenna S BMC Medicine 2011 9:86. 2 Patrick DL, et al Patient Reported Outcomes Methods Cochrane Review Group.. Cochrane Handbook for Systematic Reviews ofnterventions. Version 5.1.0. 2008 3. Mckenna S The Limitations of Patient-Reported Outcome Measurement in Oncology. Journal of Clinical Pathways. Sep 2016 Quality of life QoL, primary outcome of relevance & importance to patients. Health related quality of life HRQL Patient-reported outcomes (PROs) have been defined as “a report coming directly from patients about how they feel or function in relation to a health condition and its therapy without interpretation by healthcare professionals or anyone else 2, 3. Patient Satisfaction. Care, Comfort & Confidence. Often, a focus of Health Care Institutions Basel DayOne Experts - Patient Centricity Oct 2019
  • 43. Patient Generated Index vs Clinical Outcomes: Multiple Sclerosis Case study Domain Proportion of MS subjects reporting Problem N (%) School/Work 114 (62) Fatigue 88 (48) Sports 73 (39) Social life 52 (28) Relationships 43 (23) Walking 41 (22) Cognition 39 (21) Balance 25 (14) Housework 23 (12) Mood 21 (11) 43 Ambulation Table 1. Kuspinar & Mayo. Health and Quality of Life Outcomes 2013,11:71 The sample was relatively young (mean age 43) and predominantly female. Both men and women had mild disability with a median Expanded Disability Status Scale (EDSS) score of 2. Basel DayOne Experts - Patient Centricity Oct 2019
  • 44. Patient & People Engagement: An Illustration 1 Patient Relevant Outcomes & Information. From Patient to People Engagement Basel DayOne Experts - Patient Centricity Oct 2019 - www.gurmitsandhu.com E: gurmitsandhu97@hotmail.com 44 Clinical Relevant Outcomes Patient Relevant Outcomes Value (HTA, payer reimbursement, etc) Care, Comfort & Confidence Health Literacy & Beliefs. Trust & Respect. Medical Informatics: Omics* & Technologie s Patien ts Health Care Institutions HTA Health Technology Assessment RCTs = Randomized Clinical Trials. RWD = Real World Data *Omics includes genomics, proteomics, transcriptomics, metabolomics, interactomics, phenomics, behaviouromics, expressomics, CHOmics, etc. 1. medicines life cycle. Medicines life cycle “New Tribe”
  • 47. CARE DELIVERY MUST GO BEYOND TRADITIONAL CARE SETTINGS
  • 48. WE BELIEVE Care must move “Between and Beyond” Healthcare organizations must meet consumers where they are at, with experiences that they have been taught to expect... Consumerism in healthcare
  • 49.
  • 50. EVOLVING LANDSCAPE OF THE PATIENT JOURNEY Identification - Reactive Care “Personalized Medicine” Marketing and Population Health Management/ Engagement Identification & Stratification Care Teams, Care Managers, Health Kits StrategicImpact Level 2 Level 3 Level 4 Level 5 Level 1 Engagement and Impact Value 2012 - 2013 2018-2020 2020-2024 2024-2030 Patient and Family Engagement, Process Improvement, Care Team Depth and Breadth... All Patients “Before and After” Engagement and Proactive Care
  • 51. Head & Neck Cancer (Rabbit) Pre-Injection 5 min 24 hours 4 days Patient Guidance Status Checks, Monitoring & Surveys Adherence & Side Effect Tracking Family Engagement Info/ Support Resources Insights Dashboard for clinical teams & stakeholder ✔Multi-Channel engagement ✔Wearable Integration & Survey Engines (PRO & Patient-Generated Data collection) ✔Automated Responses based on patient reported data ✔Clinical Guidance & Education ✔Stakeholder Dashboard for longitudinal treatment insights THE VETA HEALTH SOLUTION
  • 52. Greater understanding of self- treatment and therapy to drive adherence and pos. outcomes Strengthen relationships and trust between patient and care stakeholders Therapy specification and outcome optimization THE VETA HEALTH BENEFITS
  • 53. Miami New York Boston Berlin Automated, responsive care pathways for the spaces between and beyond traditional care settings 35K All-time users 40-80% Compliance to protocols Software Partner: 3 data points/day Average Engagement 70% Patient Satisfaction Increase VETA HEALTH 4.2M Questions answered
  • 54. Veta Health 78% readmission rate reduction for 30-day CHF readmissions 75% readmission rate reduction for all-cause readmissions 14% of captured data points lead to interventions 82% resulted in patient health improvement 94% average medication compliance 70% increase in patient satisfaction American College of Cardiology (ACC) first place winner! Veta Health CASE STUDY: CONGESTIVE HEART FAILURE
  • 55. Before After Percent of Patients with Well-Controlled Asthma (ACT Score ≥ 20) 54% 71% Before After ED Visits per Year (p-value <0.05) 0.2 0.1 Before After Missed School Days per Month (p-value <0.05) 1.6 0.4 17% Improvement 50% Reduction 75% Reduction Significant improvement in asthma outcomes and management ASTHMA RESULTS N = 217 patients (before vs. after)
  • 57. THANK YOU For more information, visit myvetahealth.com
  • 58. Presentations Science Perspective: Johannes Mosbacher, Professor School of Life Sciences, FHNW
  • 59. Johannes Mosbacher Professor for Precision Pharmaceuticals – School of Life Sciences, Muttenz Patient centricity in science – old wisdom or new hype? Idea – molecules - cells – tissue – animals – patients
  • 60. Institute of Pharma Technology 4000 years ago: medicine was fully “patient-centric” Traditional Chinese Medicine is based on millions of human trials Huang Di (the Yellow emperor, ca. 2600 AC): The Canon of Internal Medicine (compiled 300 AC) Feel sick Eat plant Eat another Medicine! Feel Worse Feel Betterhttps://www.wikipedia.org 12.11.2019 60
  • 61. 12.11.2019Institute of Pharma Technology 61 Today, most scientific approaches start from “molecules” Science needs to reduce complexity to understand a system „Understanding the molecular dysfunction opens ways to therapies“ https://pixabay.com/ „A patient is a human being with a cellular or molecular dysfunction that impacts her/his health-related quality of life“
  • 62. 12.11.2019Institute of Pharma Technology 62 From narratives to case studies to a congruent picture Big Data helps today´s scientists to re-enter into the area of “whole-system-science” https://pixabay.com/
  • 63. 12.11.2019Institute of Pharma Technology 63 The Swiss Personalized Health Network Enabling Big Health Data Research https://www.sphn.ch/dam/jcr:ba06080c-06fe-443f-916e-43e59cedbe30/SPHN%20Review%20Fact-Sheet%202019.pdf
  • 64. 12.11.2019Institute of Pharma Technology 64 Pharmacogenetic tests in a dish Precision Medicine with “blockbuster drugs” http://dmd.aspetjournals.org/content/47/6/632 https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(19)31276-0/fulltext
  • 66. Patient Centricity: the patient perspective Mitchell Silva, PhD Patient Centrics
  • 68. My Story Eosinophilic Asthma Self-monitoring and education Participation in a clinical trial In search for an alternative treatment
  • 69.
  • 70. • Very controlled and supported environment to adhere to treatment • Clear goal • Perceived control by taking actions and having the tools to track • Learn more about my disease
  • 71. Where could things go better? Recruitment Trial Post-Trial
  • 72. Where could things go better? • Lack of awareness • Where to go? • What questions to ask? • Do I understand? • Awareness campaigns • Communities • Patient Guidance • Understandable IC’s Format IC’s Recruitment Trial Post-Trial
  • 73. Where could things go better? • Lack of awareness • Where to go? • What questions to ask? • Do I understand? • Awareness campaigns • Communities • Patient Guidance • Understandable IC’s Format IC’s Recruitment Trial Post-Trial
  • 74. • Missed appointments • Badly prepared • PDA not working • Motivation (heavy trial) • Shared calendar • How to prepare guide / visit (checklist) • Apps on own device • Support during trial Where could things go better? • Lack of awareness • Where to go? • What questions to ask? • Do I understand? • Awareness campaigns • Communities • Patient Guidance • Understandable IC’s Format IC’s Recruitment Trial Post-Trial
  • 75. • Missed appointments • Badly prepared • PDA not working • Motivation (heavy trial) • Shared calendar • How to prepare guide / visit (checklist) • Apps on own device • Support during trial • What next? • What are my results? • Can I have my data? • Am I excluded from other trials? • Thank you • Share latest (public) trials results • Guide to help patients after a trial Where could things go better? • Lack of awareness • Where to go? • What questions to ask? • Do I understand? • Awareness campaigns • Communities • Patient Guidance • Understandable IC’s Format IC’s Recruitment Trial Post-Trial
  • 76. Understanding the patients’ needs and the barriers to participate to optimize trial designs, informed consent forms and protocols,… , but more than that…  beyond trials Where could things go better?
  • 79. What
  • 80. Disease Area Strategy Study phase (pre-, during, post-) HTA (risk – benefit) Disease management and PSP • Define unmet needs • Define relevant added value and outcomes • Understand disease burden • Burden of participation • Procedures and visits • Endpoints • PROMs • Benefit/Risk • Patient information • IC • Practical considerations • Lay summaries • Future research opportunities • Patient Value assessment • Patient priorities • Patient relevant outcomes • Disease management tools • Patient Support Programs • PREM/PROM in real world • Patient information • Awareness TPP Impact on patient Current patient involvement
  • 81. How
  • 82.
  • 83. • Mission and roadmap • SOPs  global vs local – Interacting with patients (+ type of patients) – FMV – Internal Evaluation forms  KPIs • Create ecosystem that facilitates Patient Engagement – Know your POs – Education of PE • Be aware of context, dynamics, patient profiles How Patient Expert Patient Advocate Lay Patient
  • 84. Challenge yourself: • Don’t take the patient perspective as granted • Validate your assumptions • Train yourself • Become an ambassador and inspire • Create (more) patient value (faster), patients are waiting
  • 85. Make it Happen ! Patient Centricity Thank you Mitchell@patientcentrics.com
  • 87. ® or how to involve the patient in their health and wellness Laurie Riguccini DayOne Experts | Patient Centricity 30/10/2019
  • 88. SOLADIS Patient centricity from a technology point of view Evimeria®: our solution to monitor your health and wellness Main challenges: o How to prove the benefit of the app? o How to make itmeaningful to the users? o How do we get thegeneral indicators? Open questions
  • 89.
  • 90. Copyright © SAS Institute Inc. All r ights reserved. SOLADIS Digital SOLADISDigital Soladis Digital is a leading player in DataViz, Data Sciences, Big Data and Business Intelligence projects aiming to address the issues of health & life science industry. Years of experience strengthened our skills which enable us to answer extremely varied needs and challenges, and very specific requirements. Whether those challenges have to be faced with a full time consulting or throughout a short-time project, Soladis Digital gives you the opportunity to empower your data with information to reach your goals : to explore, to understand or to demonstrate. Businessunderstanding • Context & scope • Objectives, success criteria • Inventory of available resources (workforce,IT) Data understanding • Data Collection • Description andExploration • Quality control Datapreparation • Useful data / Commonbase • Data Cleansing, DataWareHousing • Data management, consolidation Datamodeling • Define and analyze the data according to businessobjectives • Statistical modeling, algorithms and tests • Model evaluation IT deployment • IT Architecture, Design, Installation, Configuration, Validation • Deployment, Management and Securityrules • Reporting, DataViz, Mobile app ID Methodology
  • 92. • Chronic and Acute StressIdentification : • The combination of our innovative sensors giving access to precise physiological variables, and algorithms of machine learning/artificial intelligence allow us to set up a secure and anonymous app (with integrated Chabot) to follow and identify stresstype; • Sleep Quality: • Disturbances in night breathing cause poor sleep quality with frequent nocturnal awakenings (conscious or unconscious) and increase significant clinical manifestations. We defined a technique to industrialize subject's sleep information. The application allows the subjectto distinguish between different typesof sleep apnea, in pre-diagnostic mode; • Aging In Place: • Support and increase existing alert initiatives by providing innovative solutions for anticipating and assessing the ability of subjects to be able to stay at home. Our solutions are based on artificial intelligence algorithms and applications based on the recognition of elderly behaviors with connected services in home e-health sector; EVIMERIA® Innovation
  • 93. • Evaluation of the probability of a cardiovascular complication: • The 6-minute walk test (6MWT) is a test exercise tolerance in chronic respiratory disease and heart failure. Our solution allows a digital synchronization and continuous recording data (SPO2, heart rate, speed) during the walking test and to derive new indicators to evaluate the probability of cardiovascular complication; • What Next ? • Epilepsy: Cardiac rhythmdisorders during epileptic seizures, • Alzheimer, Parkinson, • Depression, • Environment management, • … It is relevant to consolidate our technical efforts and information obtained and health issues addressed in a single tool → We need to create a Health & Well-being platform EVIMERIA® Innovation
  • 95. Sensors DataAcquisition Transfer DataViz Data Quality DataManagement Analytic Machine Learning Artificialintelligence Quality of sleep Cardiac Functional Capacity (eMWT) Stress identification Aging In Place ... Mobile App Web DesktopApp Chabot Integration and completionof operational data OUR PLATFORM DEDICATED FOR HEALTH AND WELLNESS
  • 96. Quality of sleep Cardiac Functional Capacity (eMWT) Stress identification Aging In Place ... Life QualityWhy Use Evimeria: 1. To collect data in real life (Real Life Data) and analyzeit 2. To follow the quality of life ofsubjects 3. Anticipate burnouts, stress... 4. Measure the quality of yoursleep 5. Impact of environment on quality oflife 6. Identify ways to support our elders in their home-basedchoices 7. Share experiences 8. Conductstudies 9. Chat with Evi 10. … OUR PLATFORM DEDICATED FOR HEALTH AND WELLNESS
  • 97. EVIMERIA® : Stress And sleep quality The sensors DailyStress REMSleep Daily Stress Sleepquality ChronicStress
  • 98. • Measurement of the felt stress: • Sociodemographic information • Complementaryactivities • Stress identification questionnaires • Question about his personal feelings of work-related stress • Measurement of accumulated or chronic stress: • Respiratory synchronization test via sensors • Monitoring ECG via sensors • Measure of instant stress: Decision latitude Psychologicalrequest Social support Work Recognition Emotional category Cognitive category Behavioral category Somatic category DSNA VFC Amplitude Cardiorespiratoryalignment Cardiorespiratory synchronization Cardiac frequency • Analysis of the variability of the pulsed pressure via a connectedwatch % of time stressed by the day Median variability of pulsedpressure Topics: Stress Identification
  • 99. Topics: Stress Identification Level ofstress High Medium Intermediate Low
  • 100. Our Main Challenges: 1) How to create a global indicator suitable for everyone? 2) How do we encourage people to use the app?
  • 101. Patient centricity: a definition “When you get to the point when you can’t do anything without getting a discussion with patients, that’s when you’ve embraced the concept, for example, you can’t write a protocol without getting patients’ input.” Main challenge of our health and wellnessplatform: How do we make those global stress score and sleep quality suitable for everyone? we need TO KNOW the subject
  • 102. Evimeria® app: the subject at the center
  • 103. Our app: collecting the right information
  • 104. Our app: impact of your lifestyle on your health
  • 105. Patient centricity: global stress score within a stress family
  • 106.
  • 107. Main challenge: we rely on data! DATA  We need enough data to improve our models  We need reliable data to adapt our models to the people and best fit their habits  A part of the data we use is coming from survey forms (qualitative data) and inputs from the users: we need to be able to account for the human error
  • 108.
  • 109. Panel discussion Gurmit Sandhu, Patient Engagement Specialist Nora Zetsche, Veta Health Johannes Mosbacher, School of Life Sciences, FHNW Laurie Riguccini, Soladis Mitchell Silva, www.patientcentrics.com
  • 110. Announcing: The DayOne Health Hack Let’s co-create next generation health solutions – patient driven
  • 111. A patient centric hackathon  Providing a neutral platform to explore patient-centric innovation  Putting Patient needs at the starting point  Co-creating hands-on proof of concepts • catalyzing healthcare innovation projects that can be brought to a next stage
  • 112. Help solve real world patient challenges Tech workshop(s) •Enabling capabilities •Tech mentors • Data sets •Infrastructure •... Patient Workshop(s) •Collect cases •Patient volunteers/ challenge owners •Expectations •… Curation • Identify realistic 2-day “hack” projects • Mentors • Enable Continuity Hackathon and Dayone conf. •Execute hackathon following principles • “pitches” at DayOne • … Impact follow up • Ensure Continuity when wished • Projects • Incubation •…
  • 113. Foster collaboration across silos… Pharma HCPTech
  • 114. … around patient’s needs Pharma HCPTech
  • 115. DayOne Health Hack … …generates seeds for patient- centric innovation …connects patients and software developers …increases engagement of digital talent in healthcare Pharma HCPTech
  • 116. Next DayOne Experts December 3, Markthalle Data-driven healthcare – are we ready? in close collaboration with the Embassy of the Netherlands and BioData World congress