Dr Tina Garani-Papadatos outlines the main ethical issues arising around digital health apps, and how these should be dealt with.
What are the main ethical issues that arise, in your experience, with the use of digital health technologies in the domain of palliative care?
As in many other fields, the use of digital technologies gives rise to a number of ethical challenges in palliative care. We should not forget that palliative care is provided to people in a period of vulnerability, suffering and pain. Thus, safeguarding the dignity and integrity of individuals throughout the different stages of treatment is a paramount consideration. Overall, new definitions of roles and responsibilities are being generated both for patients and health care professionals. But the main ethical issues relate especially to the safe, secure and responsible use of such technologies, which can enhance benefit to the patients and prevent any possible harms, such as violation of privacy and emotional harm.
Can you tell us a little bit about the different issues that affect the use of apps in adult, elderly and children populations?
Different age groups have different emotional and psycho-social characteristics which must be taken into account. For example, technologies aimed at pediatric cancer patients must consider the need to develop their cognitive skills which may deteriorate due to the illness. Another difference is that digital technologies for children include very often gamified apps which must be non-discriminatory, (e.g. using gender-neutral game elements). They must also be friendly and accessible. These requirements are easier to achieve in younger populations due to their broader exposure to digital technologies, whereas with older people this is often a barrier. Still, the context of their disease and relevant child protection policies must be considered. Transparency is an issue affecting all age ranges and so is consideration of proper language, either for participating in a game or for reporting short- or long-term symptoms.
How have the studies within the MyPal project addressed these issues?
MyPal has adopted a patient-centred approach, aiming both to use technology for the benefit of the patients and to tailor it according to their specific needs. The ePRO data collection aims to reveal what is really significant for the patient, as very often the significance attributed to a symptom or a side effect by the patient does not coincide with the considerations of the physician. Moreover, the approach aims to improve services in relation to access, quality, user satisfaction and efficiency. Within the Ethics Team, we have established the ethics framework for the MyPal research with emphasis on its clinical studies; we wanted to ensure that the project is carried out in compliance with the fundamental ethical principles and follows appropriate procedures, e.g. obtaining Ethics Approvals from Research Ethics Committees (RECs), setting in place proper consent and information procedures with regard to the voluntary participation of adults, children and health professionals, respect of human dignity, mitigation of risks (including psychological and social) and avoidance of harm. Our tasks also involved ensuring that all members of the Consortium were aware of and complied with the relevant data protection regulations, ethical principles and procedures.
What are your hopes for the future of app use in palliative and end of life care? What other ethical problems might appear as digital technologies become increasingly prevalent in health care?
The main goal, which is actually seen as the main promise of the mHealth revolution, is to increase patient self-management and empowerment through the use of a number of apps and/or wearable sensors. New tools will appear but the same ethical values and principles will be invoked; namely respecting the dignity and privacy of the person, assessing the benefit/harm ratio as well as addressing issues of justice and fairness, e.g. questions of allocation and access. Therefore, it is important that the ethical rules related to these technologies are constantly developed, including ethical evaluation tools and methodologies. This is absolutely necessary if we want to produce real benefit for the patients while ensuring the safety and effectiveness of treatment.
National School of Public Health, Athens, Greece