TY - JOUR

T1 - Ethical Principles in Digital Palliative Care for Children

T2 - The MyPal Project and Experiences Made in Designing a Trustworthy Approach

AU - Garani-Papadatos, Tina

AU - Natsiavas, Pantelis

AU - Meyerheim, Marcel

AU - Hoffmann, Stefan

AU - Karamanidou, Christina

AU - Payne, Sheila A.

PY - 2022/3/18

Y1 - 2022/3/18

N2 - 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.

AB - 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.

KW - Digital Health

KW - palliative care

KW - digital health

KW - research ethics

KW - cancer

KW - acceptability

KW - trustworthiness

KW - children

U2 - 10.3389/fdgth.2022.730430

DO - 10.3389/fdgth.2022.730430

M3 - Review article

VL - 4

JO - Frontiers in Digital Health

JF - Frontiers in Digital Health

SN - 2673-253X

M1 - 730430

ER -