Deliverables
Repository of use cases use cases developed in collaboration with WP2 that will serve to provide examples of use of the Observatories
Report on requirements specificationReport including specification for digital technology selection adaptation andor development produced in collaboration with Work Packages 2 and 5
Assessment of the local and national situationThe resulting report will describe the regulatory frameworks underlying the architectural design which is developed in parallel
Second annual report on the progress and success of ObservatoriesAnnual report of the second year of operation of the Observatories
Development of a cross-calibration method to be used in all three disease areas, and exploration of a cross-calibration approach between all core outcome sets and PRO toolsThis specification of crosscalibration approaches will support the interoperability of core outcome sets collected in the various disease areas
Stakeholder value propositions and sustainability success factorsConsensus value propositions and incentives most likely to secure endorsement and investment by key stakeholders
First report on the implementation of Diabetes, IBD and Cancer Treatment core outcome setsFFirst preliminary report on Diabetes IBD and Cancer Treatment core outcome set implementation with recommendations for updating core outcome set in Tier One Countries
Development of core elements of stakeholder-centric reportsThese core elements will form the basis of the stakeholdercentric reports created in two iterations
Project KPIs and success metricsList of agreed Key Performance Indicators and how they will be measured and tracked throughout the project and KPIs for the H2O solution
Bylaws of the Patient Advisory BoardsTerms of reference and principles for the selection of participants operation and governance of PABs in the three disease specific WPs
Scientific publication planPlan development to support and promote scientific publications and participation in conferences
Data Management Plan v1 including first version of master informed consentIntended data sources processing adoption of FAIR principles and potential shareability of data postproject
Development of an architecture blueprintThe architecture blueprint will guide the development of local regional national and European infrastructure components developed iteratively throughout the project
H2O information governance and ethics frameworkPortfolio of instruments and codes of practice to ensure GDPR compliance and ethical handling of outcomes data
Operational plans for the Pan-European Umbrella ObservatoryOperational plan containing description of main actions required for the deployment and functioning of the Pan European Observatories
Deployment of the first version of stakeholder-centric reportsThis initial version of the stakeholdercentric reports provided will focus on informing physicians and patients
Material for clinical implementationThis will include educational material and recommendations for patient recruitment and physician engagement
Report on educational strategies and materialEducational material for clinical implementation including strategies for patient participation and physician engagement
Project HandbookQuick reference manual for partners to consult management procedures including relevant provisions of the GACA in an easy to understand language It will also explain the tools set up to facilitate collaborative work across the Consortium
Operational plans for National ObservatoriesOperational plans containing description of main actions required for the deployment and functioning of the four National Observatories
Material for education and clinical implementationThis will include educational material and recommendations for patient recruitment and physician engagement
Observatory business architectureThe initial design of the national and above country Observatory network repositories and information flows legal and ethical governance principles
H2O Exploitation and sustainability strategyExploitation and sustainability strategy
First annual report on the progress and success of ObservatoriesAnnual report of the first year of operation of the Observatories This will include report on methodology to assess the reliability of H2O outcomes by assessing data quality and the data processing by H2O systems
Report on requirements specificationsReport including specification for digital technology selection adaptation andor development produced in collaboration with Workstreams 2 3 and 5
Overarching operational plan for National ObservatoriesOperational plan containing general description of main actions required for the deployment and functioning of the National Observatories
Report of requirements specificationDefinition of requirements specification for inclusion of PROMs in the outcome set and report on the specification for digital technology selection adaptation andor development produced in collaboration with Workstreams 2 3 and 4
First version of the development platform finalised and operationalInitial versions of the development platforms will vary between countries and can contain a comprehensive interface to patients for entering PRO data patient consent interfaces to selected wearable devices as well as a physicianhealthcare provider portal supporting Clinical Decision Making Features will be added during the project time aiming for a flexible PRO system to support further use WP2 in collaboration with the country teamsNOs will be accountable for this
Project communication plan and initial tool setPlan for communicating the project progress and its results It will comprise dissemination objectives target audience tools and planned activities
Training material for PAB members to enable their informed participation in decisions on indicator selection and interpreting outcome findings.
Publications
Author(s):
Long, Preston; Andrews, Margaret R; Thwaites, Rob; Stamm, Tanja; H2O Consortium
Published in:
Zenodo, 2023
Publisher:
CERN
DOI:
10.5281/zenodo.8167404
Author(s):
Belle H. de Rooij, Corina van den Hurk, Veerle Smaardijk, Paz Fernandez-Ortega, Arturo Navarro-Martin, Lidia Barberio, Matthias Guckenberger, Severin Schmid, Iris Walraven, Susan Vallow, Christina Kotsi, Matthias Preusser, Erika Mosor, Jente M. Klok, Annemarie Becker, Alessandra Milani, Lyudmil Ninov, Lonneke V. van de Poll-Franse
Published in:
Lung Cancer, Issue Vol 173, 2022, Page(s) 5-13, ISSN 0169-5002
Publisher:
Elsevier BV
DOI:
10.1016/j.lungcan.2022.08.021
Author(s):
Kathryn Hamilton, Rita Forde, Mette Due-Christensen, Katarina Eeg-Olofson, David Nathanson, Sophia Rossner, Sara Vikstrom-Greve, Ann-Kristin Porth, Yuki Seidler, Alexandra Kautzky-Willer, Laure Delbecque, Asli Zeynep Ozdemir Saltik, Yvonne Hasler, Vanesa Flores, Tanja Stamm, David Hopkins, Angus Forbes
Published in:
Patient Education and Counseling, Issue Vol 116, 2023, Page(s) 107933, ISSN 0738-3991
Publisher:
Elsevier BV
DOI:
10.1016/j.pec.2023.107933
Author(s):
Tanja Stamm, Nick Bott, Rob Thwaites, Erika Mosor, Margaret R. Andrews, Joris Borgdorff, Yolima Cossio-Gil, Simona de Portu, Marc Ferrante, Felix Fischer, Farhan Hameed, Jan Hazelzet, David Hopkins, Dipak Kalra, Thomas Metcalfe, Eva Molero, Rachel Newson, Francesco Patalano, Fabian Prasser, Matthias Rose, Mikkel Lindskov Sachs, Jeannette Soderberg, Valentina Strammiello, Lonneke van de Poll & Meni
Published in:
NEJM Catalyst Innovations in Care Delivery, Issue Volume 2 Issue 3, 2021, Page(s) Online, ISSN 2642-0007
Publisher:
NEJM Group
DOI:
10.1056/cat.21.0146
Author(s):
K. M. de Ligt, B. H. de Rooij, E. Hedayati, M. M. Karsten, V. R. Smaardijk, M. Velting, C. Saunders, L. Travado, F. Cardoso, E. Lopez, N. Carney, Y. Wengström, A. Ives, G. Velikova, M. D. L. Sousa Fialho, Y. Seidler, T. A. Stamm, L. B. Koppert, L. V. van de Poll-Franse on behalf of the Innovative Medicines Initiative - Health Outcomes Observatory (H2O) consortium
Published in:
Breast Cancer Research and Treatment, Issue 198, 2023, Page(s) 265–281, ISSN 0167-6806
Publisher:
Kluwer Academic Publishers
DOI:
10.1007/s10549-022-06827-6
Author(s):
Ann-Kristin Porth, Anouk Sjoukje Huberts, Alizé Rogge, Angèle Helene Marie Bénard, Angus Forbes, Anja Strootker, Carmen Hurtado Del Pozo, Dagmar Kownatka, David Hopkins, David Nathanson, Henk-Jan Aanstoot, Jeanette Soderberg, Katarina Eeg-Olofsson, Kathryn Hamilton, Laure Delbecque, Lyudmil Ninov, Mette Due-Christensen, Michael Leutner, Rafael Simó, Sara Vikstrom-Greve, Sop
Published in:
Diabetic Medicine, Issue 00, 2023, Page(s) e15259, ISSN 0742-3071
Publisher:
Blackwell Publishing Inc.
DOI:
10.1111/dme.15259
Searching for OpenAIRE data...
There was an error trying to search data from OpenAIRE
No results available