@article{Garani-Papadatos2022-il,
title = {Ethical Principles in Digital Palliative Care for Children: The
MyPal Project and Experiences Made in Designing a Trustworthy
Approach},
author = {Tina Garani-Papadatos and Pantelis Natsiavas and Marcel Meyerheim and Stefan Hoffmann and Christina Karamanidou and Sheila A Payne},
year = {2022},
date = {2022-03-01},
journal = {Front Digit Health},
volume = {4},
pages = {730430},
abstract = {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 caregivers, with regard to technological advance of
digital health. 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 concepts available from previous
projects. Development and implementation of ePROs need to take
place in a safe, secure and responsible manner, preventing any
possible harm and safeguarding the integrity of humans. To that
end, although the final results will be published at the end of
the project, this paper aims to increase awareness of the ethical
ramifications we had to address in the design and testing of new
technologies and to show the essentiality of protection and
promotion of privacy, safety and ethical standards. We have thus
reached a final design complying with the following principles:
(a) respect for the autonomy of participants, especially
children, (b) data protection and transparency, (c) fairness and
non-discrimination, (d) individual wellbeing of participants in
relation to their physical and psychological health status and e)
accessibility and acceptability of digital health technologies
for better user-engagement. These principles are adapted from the
Ethics Guidelines for a trustworthy Artificial Intelligence (AI)
which provide the framework for similar interventions to be
lawful, complying with all applicable laws and regulations,
ethical, ensuring compliance to ethical principles and values and
robust, both from a technical and social perspective.},
keywords = {acceptability; cancer; children; digital health; palliative care; research ethics; trustworthiness},
pubstate = {published},
tppubtype = {article}
}
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 caregivers, with regard to technological advance of
digital health. 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 concepts available from previous
projects. Development and implementation of ePROs need to take
place in a safe, secure and responsible manner, preventing any
possible harm and safeguarding the integrity of humans. To that
end, although the final results will be published at the end of
the project, this paper aims to increase awareness of the ethical
ramifications we had to address in the design and testing of new
technologies and to show the essentiality of protection and
promotion of privacy, safety and ethical standards. We have thus
reached a final design complying with the following principles:
(a) respect for the autonomy of participants, especially
children, (b) data protection and transparency, (c) fairness and
non-discrimination, (d) individual wellbeing of participants in
relation to their physical and psychological health status and e)
accessibility and acceptability of digital health technologies
for better user-engagement. These principles are adapted from the
Ethics Guidelines for a trustworthy Artificial Intelligence (AI)
which provide the framework for similar interventions to be
lawful, complying with all applicable laws and regulations,
ethical, ensuring compliance to ethical principles and values and
robust, both from a technical and social perspective.