A summary of the four articles related to MyPal which form part of the special issue of Frontiers in Digital Health on the topic of palliative care.
In last year’s spring newsletter, we published a call for papers for a special issue of the open-access multidisciplinary journal Frontiers in Digital Health, focusing on digital health in palliative care. We are pleased to announce that the special issue is now published and can be accessed here. Of the eight articles within the issue, four are directly related to MyPal, and two of three co-editors are engaged as researchers on the project. In this article we will briefly present the research in this special issue related to findings from the MyPal project, emphasising their aspects related to the newsletter theme of ethics and equity.
As co-editors Cathy Payne, Haridimos Kondylakis and Lefteris Koumakis point out in the editorial to the special issue, the rising integration of technological advances into palliative care demands shifts in the research culture towards broader collaboration across disciplines, not limited to the areas of health and medicine but also including computing, engineering, big data… Such truly multidisciplinary research, and the innovations stemming from it, will however bring a unique set of methodological and practical challenges that need to be addressed. In Challenges and Pitfalls for Implementing Digital Health Solutions in Clinical Studies in Europe, Meyerheim et al. draw on experiences from setting up the observational prospective clinical feasibility MyPal-Child study (MyPal4Kids) to give recommendations for implementing digital health solutions in clinical studies and avoiding delays and other setbacks. They particularly stress the need for ongoing communication, information exchange and relevant training for all those participating in such research at different sites.
The need for appropriate communication emerges as a key theme in another paper focusing on MyPal-Child: in AquaScouts: ePROs Implemented as a Serious Game for Children With Cancer to Support Palliative Care, Hoffmann et al. set out the design and development process behind the two apps developed for the child study. They give a detailed overview of the goals of the AquaScouts serious game and how these were realised – ensuring the game is well tailored to its eventual users and that common pitfalls like game addiction and cognitive burden are avoided. On the other hand, Fostering Palliative Care Through Digital Intervention: A Platform for Adult Patients With Hematologic Malignancies by Koumakis et al. presents the distinct technical infrastructure for the MyPal-Adult randomised clinical trial, and the user centered development process at the heart of the study. Both of the papers present the commitment to recognising and accommodating diverse participant needs in designing and implementing these innovations, which has been a central tenet of all research done within MyPal.
Ethical concerns, likewise, are kept in mind and addressed at all stages of the research: Meyerheim et al. discuss the necessity of both ethical and legal evaluation of clinical studies, and the importance of having an ethical committee internal to the project from the outset; Hoffmann et al. mention the need for satisfying ethical requirements when developing serious games, and ensuring that the intervention is developed having in mind the specific psychological and physical challenges faced by young cancer patients; and Koumakis et al. elaborate on the participatory design process, as well as extensive measures taken to safeguard participant data and privacy. The final MyPal-related article in this special issue, Ethical Principles in Digital Palliative Care for Children: The MyPal Project and Experiences Made in Designing a Trustworthy Approach by Garani-Papadatos et al, focuses explicitly on the ethical challenges identified within the project and how these were addressed in order to build a trustworthy approach that also ensures participants wellbeing and respects autonomy. Beyond analysing how this was done in MyPal, the paper also provides a comprehensive and helpful review of recent ethical work on digital technologies and the challenges of regulatory compliance when using innovative technology, particularly artificial intelligence.
We believe this very rich and diverse special issue will be of interest to researchers, healthcare professionals and members of the public from various backgrounds, given the broad range of topics covered and truly innovative research featured in it.
Digital Health for Palliative Care
special issue of Frontiers in Digital Health