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MyPal-Child study protocol: an observational prospective clinical feasibility study of the MyPal ePRO-based early palliative care digital system in paediatric oncology patients

Marcel Meyerheim, Christina Karamanidou, Sheila Payne, Tina Garani-Papadatos, Annette Sander, Julia Downing, Kostas Stamatopoulos, J Ling, Cathy Payne, Lydia Scarfò, Petr Lokaj, Christos Maramis (+1 others)
2021 BMJ Open  
IntroductionElectronic patient-reported outcomes (ePROs) have tremendous potential to optimise palliative and supportive care for children with cancer, their families and healthcare providers.  ...  Outcomes that will be assessed concern the feasibility and the evaluation of the newly designed digital health platform to contribute to the evidence base of clinical ePRO use in paediatric oncology and  ...  MyPal is a Horizon 2020 Research and Innovation Action aiming to foster palliative care for people with cancer by leveraging ePRO systems through their adaptation to the personal needs of the person with  ... 
doi:10.1136/bmjopen-2020-045226 pmid:33849855 pmcid:PMC8051393 fatcat:7eq2piwm2vfydnuu423xgwu3ga

Fostering Palliative Care Through Digital Intervention: A Platform for Adult Patients With Hematologic Malignancies

Lefteris Koumakis, Fatima Schera, Heather Parker, Panos Bonotis, Maria Chatzimina, Panagiotis Argyropaidas, Giorgos Zacharioudakis, Michael Schäfer, Christine Kakalou, Christina Karamanidou, Jana Didi, Eleni Kazantzaki (+3 others)
2021 Frontiers in Digital Health  
MyPal is a Horizon 2020 European project aiming to support palliative care for cancer patients via the electronic PROs (ePROs) paradigm, building upon modern eHealth technologies.  ...  To this end, as PROs can be used to quantify the patient impact (especially important for chronic conditions such as cancer), they can play a prominent role in providing patient-centric care.  ...  In the last 10 years, a number of digital interventions aiming to support palliative cancer care based on the electronic PRO (ePRO) systems have been evaluated.  ... 
doi:10.3389/fdgth.2021.730722 pmid:34977857 pmcid:PMC8718505 fatcat:fvmxcissszaqnjs2iltyvxh2gq

MyPal ADULT study protocol: a randomised clinical trial of the MyPal ePRO-based early palliative care system in adult patients with haematological malignancies

Lydia Scarfò, Christina Karamanidou, Michael Doubek, Tina Garani-Papadatos, Jana Didi, Charalampos Pontikoglou, Julie Ling, Cathy Payne, Helen Α Papadaki, Richard Rosenquist, Niki Stavroyianni, Sheila Payne (+4 others)
2021 BMJ Open  
Patients will be randomly allocated to early palliative care using the MyPal system (n=150) versus standard care including general palliative care if needed (n=150).  ...  MyPal is a Horizon 2020 Research & Innovation Action aiming to meet this challenge and foster palliative care for patients with CLL or MDS by leveraging ePRO systems to adapt to the personal needs of patients  ...  study in palliative care using an innovative approach based on electronic patient-reported outcome-based systems to improve the quality of life of patients with chronic lymphocytic leukaemia (CLL) or  ... 
doi:10.1136/bmjopen-2021-050256 pmid:34728446 pmcid:PMC8565565 fatcat:lzgkvq5hojc6jj4m5pnongqkjy

Ethical Principles in Digital Palliative Care for Children: The MyPal Project and Experiences Made in Designing a Trustworthy Approach

Tina Garani-Papadatos, Pantelis Natsiavas, Marcel Meyerheim, Stefan Hoffmann, Christina Karamanidou, Sheila A Payne
This paper explores the ethical dimension of the opportunity to offer improved electronic patient-reported outcome (ePRO) systems addressing personal needs of pediatric cancer patients, their parents and  ...  This opportunity has been explored in the MyPal research project, which aims to assess a patient-centered service for palliative care relying on the adaptation and extension of digital health tools and  ...  The mutual vision is to explore the role of ePROs in fostering palliative cancer care and in complementing traditional methods of support to cancer patients and to the people who are involved in their  ... 
doi:10.3389/fdgth.2022.730430 pmid:35373180 pmcid:PMC8971573 fatcat:mqj322pmdfdebmlw5noga6zesa

Smart Healthcare Apps for Quality Cancer Patient Support

Angelina Kouroubali, Lefteris Koumakis, Haridimos Kondylakis, Dimitrios G. Katehakis
2020 International Journal of Big Data and Analytics in Healthcare  
It proposes an integrated approach towards developing quality mobile health apps for cancer and discusses issues relevant to the enhancement of patient experience and acceptance, adherence to treatment  ...  Improving quality of life and well-being, in a secure and safe manner that respects the patients' privacy, seems to be a key challenge, together with the exploitation of the outcomes of recent research  ...  He has participated in the implementation of a large number of eHealth projects, in both Europe and the US.  ... 
doi:10.4018/ijbdah.2020010103 fatcat:5rdsvb3ofvbkrhvtmiqvcub45m

D2.1 - User and Ecosystem Requirements and Methodology

Christian Brossette, Norbert Graf, Federico Álvarez, Alberto Tozzi, Pilar Gangas, Diana López
2021 Zenodo  
The ethical and medical considerations for the ecosystem described and the key legal requirements, form the framework for a future implementation plan.  ...  An outline of technical and artificial intelligence considerations is listed for a state-of-the-art ecosystem foundation. High level insights reflect the political situation.  ...  Le pseudonyme est utilisé à la place du nom réel du patient ou de son numéro de patient et sert à dissimuler son identité.  ... 
doi:10.5281/zenodo.5639135 fatcat:xbpto7sib5amjp543e4scabale