What does “patient centricity” really mean and how is it actually done? This was the driving question of the DayOne Experts Meeting in Basel, co-hosted by Arcondis.
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
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
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
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.
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”
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)
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
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
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?
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
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
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
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
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
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
•…
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