Frontier Personalized Medicine & Health Research needs a connecting infrastructure
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1 Frank Miedema 1 ; Gerrit Meijer 2,1 1 University Medical Center Utrecht; 2 Netherlands Cancer Institute Amsterdam Frontier Personalized Medicine & Health Research needs a connecting infrastructure
2 Why Health-RI? research care innovation
3 Personalized Medicine & Health
4 The underlying problem FRAGMENTATION of data sample collections image collections regulations software tools research initiatives funding expertise etc.
5 What is needed? The large societal challenges ask for. large series higher quality at faster speed concerted action open collaborations sharing of data, samples, expertise connected by a data backbone
6 A culture of data sharing Health-RI is well aligned with European initiatives for open science & data sustainability
7 Change scientific incentives and rewards for adoption of open science Provide incentives and rewards for academics to work on Open Science and use of Open Science Funders (public and private) want us to work according to Open Science and Open Access
8 Back to Health-RI: What needs to be done? If we want better health outcomes in the future, we need to change clinical & public health practice change guide lines have high-level evidence conduct the research to do so facilitated by excellent infrastructure
9 Better research infrastructure = better health outcomes Paradigm shift needed like has happened in many other areas of society
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11
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13 Internet of Personalized Medicine&Health Data&Things Biobanks, cohorts Wearables Clinical records MRI center Research laboratory Microscopy facility Twitter data
14 For researchers
15 For institutions No longer short term point solutions over and over again Compliance by design to technical, ELSI and scientific standards Easier & safer exchange with (inter)national collaborators More efficient business operations Less risks More success!
16 For funders Less resources lost on waste, redundancy and overhead Fast implementation of FAIR data stewardship Better conditions for obtaining practice changing results More return on investment on their mission
17 For private sector Excellent basis for PPP Professional grade services Single point of contact Standardized transparant conditions & procedures Access to networks to strengthen their businesses
18 For Dutch government Professionally organized stakeholder community Clearer view on the actual process that needs to be regulated Opportunity to harmonize fragmented legislation in a way that facilitates personalized medicine & health research Effective home for personalized medicine & health ESFRI program national nodes More economic value being generated Stay ahead in international developments, e.g. European Open Science Cloud
19 For citizens Better opportunities for active participation Better privacy More benefit from tax and charity money spent Faster translation of basic science into new preventive, diagnostic and therapeutic solutions
20 biobanks
21 multi-omics: FAIR data warehouse
22 Imaging: Deep Learning for Medical Image Analysis
23 Office 365 for translational research
24 Personal Health Train Bringing research questions (trains) to FAIR data (stations) in a secure network (track) with the citizen in control
25 Patient and Public Advisory Council Bringing together multiple perspectives: Patient organizations & advocates Citizens & donors Experts & professionals Trust, input, feedback
26 Endorsed by stakeholders
27 Recognized by authorities
28 Proposed temporary governance Health RI Stakeholder Assembly Society /citizen representatives, patient representatives, healthcare system, knowledge institutes, research infrastructures, research funders (including health foundations), industry, government (science, healthcare system, economy), Strategic Advisory Committee Small group of Board level representatives (DG ministry, Dean(s), SGF Board member, Topsectors, ) Steering Committee Connected to NL nodes of international infrastructures like BBMRI, EATRIS, ELIXIR: André Dekker Alain van Gool Jaap Heringa Ruben Kok Peter Luijten Gerrit Meijer Ronald Stolk Scientific Advisory Committee Leading (international) researchers committed to Health RI Operational Team By NL ESFRI nodes and temporary in kind staffing by DTL/NFU/Lygature/BBMRI-NL
29 Agenda 2017 further development of the Health-RI organisation position Health-RI as the Dutch national infrastructure for personalized medicine&health research engage with all relevant stakeholders develop final governance model develop financial model
30 Financial model comprehensive approach by involving all funders researchers/institutions/patients/citizens long term committment required two components structural basic service innovation fee for service earmarked in competitive grants
31 That s why! basic research > excellent science> care
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