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… am a professional magician, and greatly interested in framing effects, cognitive biases and the (mis) interpretation of information 2022-11-28 3 Challenges? 2022-11-28 4 Real-world evidence Rare disease Value frameworks Use of cost- effectiveness thresholds Communication and use of language Dealing with uncertainty Collaboration Engagement and deliberation Affordability Timeliness Fake challenges Real challenges Politicization Impact 1. Communication (a) HTA Definition: “A multidisciplinary process … resources • Will reduce rates of premature mortality • Also produce 3 additional QALYs for every 1000 babies screened • Will reduce hospitalization • Also reduces hospitalization rates by 25% • Requires $20 million annual investment • Will create more mouths to feed ($$$) ($$$) Challenges and Solutions for HTA 2. Engagement and deliberation - solutions Guidance on deliberative processes for HTA • Oortwijn W, Husereau D, Abelson J, Barasa E, Bayani DD, Canuto Santos V, et al. Designing and … Weather prediction uses multiple models – yet predicting what is valuable in healthcare often relies on one model • Subjective Bayesian approaches through structured expert elicitation (2) • Potential for bias through quantitative bias analyses (3) • When is ITC truly infeasible? • Not good enough to say trials are too imbalanced (I2 value does not tell us) • Sadly, latest GPF document provides little guidance! • “Possible next steps to more openly and inclusively manage how uncertainty is …

… A2 | 1ANNUAL REPORT 2018 | MHeNs| ANNEX II MHeNs / EURON PhD EDUCATIONAL PROGRAM A2 | 2ANNUAL REPORT 2018 | MHeNs| COURSE PROGRAM MHeNs / EURON 2018 Course/workshop/event Organizer(s) Description Faculty staff MHeNs/EURON and partners (actively) involved Number of participants ECTS / duration January 10-12, 2018 ESM Data Analysis Course - http://www.wvbauer.com/course_esm Maastricht University / Wolfgang … programme by the universities of Maastricht and Florence, a combination of residential courses and distance teaching. The programme offers a scientific training in the subspecialty of affective disorders. Taught by leading scientists, the programme deals with the latest developments in the field. It is a complement for professional training in psychiatry, clinical psychology and neuroscience. The course can be taken as a single course in the Summer School on Affective Neuroscience, leading to a … David Linden, UM. MHeNs: G. Kenis, D. Linden, N. Senden. Other EURON partners: UC Louvain: P. Kienlen-Campard, A. Jankovski, F. Tissir. P. leprince (Ulg); M. Rothermel (RWTH Aachen); C. Lefebvre (Lille) 110 0,5 ECTS for attendance + 0.5 ECTS extra when having a poster or oral presentation Nov. 28, 2018 MHeNs 11th Annual Research Day ““Career perspectives in and outside academia”” Maastricht / D. Linden, M. Moers Annual meeting with keynote speakers from MHeNs; PhD student and post doc …

… curation 2/26/23 WIDS – March 7, 2023 11 Raw data Spread across systems Heterogenous Identifiable Partial view of “me” Curated Data Set Pooled Standardized Pseudo/anonymized No linked view of “me” “curate many times, use once (and then dump them when analytics is done)” Hospital GP Genomic Vaccinatio n Approaches to Data Curation Horizontal curation 2/26/23 WIDS – March 7, 2023 12 Raw data Spread across systems Heterogenous Identifiable Partial view of “me” Curated Data Set Pooled Standardized … Curation: Harmonization, Integration Consent Management Personal Health Knowledge Graph (me) Reference Ontology The key challenge is how much we can automate this process by orchestrating multiple (AI) tools 2/26/23 DATA LAKE (interim secure data store) AIDAVA Overview of proposed solution 16 CURATED DATA IDENTIFIED (Personal Health Record e.g. IPS) CURATED DATA PSEUDO/ANONYMIZED (Common Good e.g. Clinical registry) Frontend User VA Patient Easy/ Cons ent? YES NO Data Steward Expert VA PERSONAL … Data Discovery Dynamic Consent (EU Digital Wallet) Catalogue supporting (re) generation Integrate and curate ONCE, into a PHKG for each individual Health Data Intermediaries (per DGA) ½ automated curation (AIDAVA) 2/23/23 WIDS – March 7, 2023 19 The best way I, as an EU citizen, can support the common good in health care is to start by my personal data, by maximizing their quality and agreeing to share them in trust THANK YOU 2/23/23 20 For questions, please contact isabelle@dezegher.com +32 478 …

… decisions without knowing who you would be in this new society? “But the nature of man is sufficiently revealed for him to know something of himself and sufficiently veiled to leave much impenetrable darkness, a darkness in which he ever gropes, forever in vain, trying to understand himself.” — Alexis de Tocqueville, Democracy in America Philosopher John Rawls asked just that in a thought The Fairness Principle: How the Veil of Ignorance Helps Test Fa... … world,” however, there will be a wide variety in the natural distribution of natural assets and abilities, and that there will be differences of sex, race, and culture that will distinguish groups of people from each other. “The Fairness Principle: When contemplating a moral action, imagine that you do not know if you will be the moral doer or receiver, and when in doubt err on the side of the other person.” — Michael Shermer, The Moral Arc: How Science and Reason Lead Humanity Toward Truth, … live a comfortable life.) The conditions necessary for self-respect For these conditions to occur, the people behind the Veil of Ignorance must figure out how to achieve what Rawls regards as the two key components of justice: Everyone must have the best possible life which does not cause harm to others. Everyone must be able to improve their position, and any inequalities must be present solely if they benefit everyone. However, the people behind the Veil of Ignorance cannot be The Fairness …