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2019.10.30 DayOne Expert Event patient centricity

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.

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2019.10.30 DayOne Expert Event patient centricity

  1. 1. DayOne Experts 30. October 2019, Basel Patient Centricity - what does it mean and how is it done?
  2. 2. Thomas Brenzikofer, Co-Founder DayOne
  3. 3. #DayOneBasel
  4. 4. An initiative managed by in close collaboration with the Canton of Basel-Stadt.
  5. 5. 5 A growing community of 1500+ healthcare innovators
  6. 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. 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
  9. 9. 25
  10. 10. 26 Co-Host Mark Dangel
  11. 11. 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, Technology Perspective: Laurie Riguccini, Soladis 19:20 Panel discussion with speaker and audience 20:00 Wrap-up and networking with refreshments
  12. 12. Main Stakeholders Pharma HCP PayorTech Gov/Reg
  13. 13. Patient Centricity Pharma HCP PayorTech Gov/Reg
  14. 14. Pharma HCP PayorTech Gov/Reg Ecosystem
  15. 15. Pharma HCP PayorTech Gov/Reg Patient’s Interaction
  16. 16. Pharma HCP PayorTech Gov/Reg Patient’s Interaction
  17. 17. Pharma HCP PayorTech Gov/Reg Patient’s Interaction
  18. 18. Pharma HCP PayorTech Gov/Reg Patient’s Engagement
  19. 19. Pharma HCP PayorTech Gov/Reg Patient’s Engagement
  20. 20. Presentations Industry Perspective: Gurmit Sandhu, Patient Engagement Specialist
  21. 21. 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
  22. 22. 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.
  23. 23. Patient Relevant Outcomes: Overview Physical, practical, social, emotional & others (fatigue, sleeplessness) 40Basel DayOne Experts - Patient Centricity Oct 2019
  24. 24. 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
  25. 25. 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
  26. 26. 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
  27. 27. Patient & People Engagement: An Illustration 1 Patient Relevant Outcomes & Information. From Patient to People Engagement Basel DayOne Experts - Patient Centricity Oct 2019 - E: 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”
  28. 28. Presentations Entrepreneur’s Perspective: Nora Zetsche, CEO Veta Health
  29. 29. Happy, Healthy Patients
  31. 31. 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
  32. 32. 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
  33. 33. 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
  34. 34. 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
  35. 35. 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
  36. 36. 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
  37. 37. 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)
  38. 38. Demand Quality
  39. 39. THANK YOU For more information, visit
  40. 40. Presentations Science Perspective: Johannes Mosbacher, Professor School of Life Sciences, FHNW
  41. 41. 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
  42. 42. 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 Better 12.11.2019 60
  43. 43. 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“ „A patient is a human being with a cellular or molecular dysfunction that impacts her/his health-related quality of life“
  44. 44. 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”
  45. 45. 12.11.2019Institute of Pharma Technology 63 The Swiss Personalized Health Network Enabling Big Health Data Research
  46. 46. 12.11.2019Institute of Pharma Technology 64 Pharmacogenetic tests in a dish Precision Medicine with “blockbuster drugs”
  47. 47. Presentations Patient’s Perspective Mitchell Silva
  48. 48. Patient Centricity: the patient perspective Mitchell Silva, PhD Patient Centrics
  49. 49. My Story
  50. 50. My Story Eosinophilic Asthma Self-monitoring and education Participation in a clinical trial In search for an alternative treatment
  51. 51. • 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
  52. 52. Where could things go better? Recruitment Trial Post-Trial
  53. 53. 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
  54. 54. 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
  55. 55. • 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
  56. 56. • 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
  57. 57. 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?
  58. 58. Simple changes with big impact
  59. 59. Simple changes with big impact
  60. 60. What
  61. 61. 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
  62. 62. How
  63. 63. • 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
  64. 64. 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
  65. 65. Make it Happen ! Patient Centricity Thank you
  66. 66. Presentations Technology Perspective: Laurie Riguccini, Soladis
  67. 67. ® or how to involve the patient in their health and wellness Laurie Riguccini DayOne Experts | Patient Centricity 30/10/2019
  68. 68. 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
  69. 69. 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
  70. 70. Innovative projects
  71. 71. • 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
  72. 72. • 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
  73. 73. Health and Wellness platform
  74. 74. 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
  75. 75. 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
  76. 76. EVIMERIA® : Stress And sleep quality The sensors DailyStress REMSleep Daily Stress Sleepquality ChronicStress
  77. 77. • 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
  78. 78. Topics: Stress Identification Level ofstress High Medium Intermediate Low
  79. 79. Our Main Challenges: 1) How to create a global indicator suitable for everyone? 2) How do we encourage people to use the app?
  80. 80. 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
  81. 81. Evimeria® app: the subject at the center
  82. 82. Our app: collecting the right information
  83. 83. Our app: impact of your lifestyle on your health
  84. 84. Patient centricity: global stress score within a stress family
  85. 85. 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
  86. 86. Panel discussion Gurmit Sandhu, Patient Engagement Specialist Nora Zetsche, Veta Health Johannes Mosbacher, School of Life Sciences, FHNW Laurie Riguccini, Soladis Mitchell Silva,
  87. 87. Announcing: The DayOne Health Hack Let’s co-create next generation health solutions – patient driven
  88. 88. 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
  89. 89. 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 •…
  90. 90. Foster collaboration across silos… Pharma HCPTech
  91. 91. … around patient’s needs Pharma HCPTech
  92. 92. DayOne Health Hack … …generates seeds for patient- centric innovation …connects patients and software developers …increases engagement of digital talent in healthcare Pharma HCPTech
  93. 93. 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