Elpida Pavi and Tina Garani-Papadatos discuss their institution’s role in MyPal as the leaders of the Work Package on ethics.
Can you tell us a little about the work and history of your institution?
The University of West Attica (UniWA-PDA) is the result of a merger (in 2018) of the former Technological Educational Institute of Athens and the Piraeus University of Applied Sciences. The Department of Public Health Policy was established in 2019 as the successor of the National School of Public Health (ESDY-NSPH). Given the School’s long history (it was first established in 1929), the Department is highly specialised in education and research in all multidisciplinary areas of public health and health care policy. We participate within MyPal as the Department’s Laboratory for Health Technology Assessment – LabHTA, which is active in education and research in innovative health and public health technologies, with a focus on their economic evaluation and bioethical aspects.
What is the department’s role in the project? (What does this involve?)
The Dept. of Public Health Policy through the LabHTA contributes in two ways to the MyPal project. Firstly, it leads Work Package 1 which is in charge of monitoring ethical issues throughout the whole project; secondly, it contributes to the monitoring of drivers for leveraging Patient Reported Outcomes systems for palliative cancer care, e.g. clinical practices, the everyday routine of patients and quality of life, the relationship between healthcare providers and patients, health and digital literacy issues, and behavioural and mental aspects. It also leads two project tasks: T6.2 on the evaluation and impact assessment framework, and T6.4 on the effectiveness, cost-effectiveness and health technology assessment of MyPal.
Have you done work on any other previous projects involving digital health? Can you tell us a little bit about these?
While we have not participated in projects specifically in digital health, we have worked on other health and public health technologies through participation in various EU-funded projects, like the European Network for Health Technology Assessment-EUnetHTA, the Managed Outcomes Project on operations management, demand-based approaches to healthcare outcomes and cost-benefits research, as well as national projects on patients’ experiences and outcomes (e.g. the journey of breast and prostate cancer patients). Our involvement covers both the scientific and ethical aspects arising.
Why did the department take the lead on the ethics work package within MyPal?
On the one hand, our department has a longstanding involvement and experience in bioethics and health law both nationally and internationally. On the other hand, we also have an excellent relationship with the CERTH research team who coordinate the project. Therefore, the combination of these two elements has led to us taking the lead in ethics with the support of experienced and knowledgeable MyPal Partners.
What are your hopes for MyPal?
We hope to promote the development and deployment of digital health technologies in full compliance with scientific and ethical rules, while ensuring the safety and effectiveness of treatment. Furthermore, our ambition is for the health technology assessment procedure to provide evidence that such digital applications could and should be adopted by health care providers and reimbursed by health care payer organisations (e.g. health insurance).
What are the greatest challenges you have faced in your work on the project, and how have you addressed these?
Both the design and the implementation of the MyPal4Kids and the MyPal Adult studies raised a number of ethical challenges relating to the autonomy, wellbeing and privacy of participants. We have tried not only to respect the autonomy of the participants as individuals, by providing for appropriate consent or withdrawal procedures (i.e., the right to withdraw from the study at any moment), but also, we strive to promote their decision-making capacity, their self-esteem and their ability to cope with treatment through the use of digital applications as tools for improved interaction with their carers and health care providers. This has been particularly relevant for participating teenagers, who in parallel with their illness face a number of emotional and physical transformations.
