The MyPal project, funded by the European Union’s Horizon 2020 research innovation programme, aimed to “foster palliative care for people with cancer by leveraging patient reported outcome systems through their adaptation to the personal needs of the person with cancer and his/her caregiver”
As part of the dissemination strategy for the study, the project team has developed an eBook on “Developing digital health for adults and children with cancer”. The development of the eBook was led by the International Observatory on End of Life Care at Lancaster University, UK. It includes input from a range of the partners involved in the project including, The Centre for Research and Technology Hellas and the University of West Attica in Greece, the Fraunhofer Institute for Biomedical Engineering, Promotion Software GMBH, the Saarland University and Hannover Medical School in Germany, and the Universita Vita Salute and IRCCS Ospedale San Raffaele in Italy.
The book provides and introduction to the MyPal project, a summary of the literature on digital health, ethics, the digital systems used in the adult and child studies along with the design and preliminary outcomes, followed by some preliminary conclusions from the study. Information presented at the MyPal Expert Policy and Practice workshop, organised by the International Children’s Palliative Care Network (ICPCN) and the European Association of Palliative Care (EAPC) in London in October was also include. Key messages from the eBook include:
- The importance of building upon the existing evidence and literature on the use of ePROs to facilitate communication between patients and clinicians in cancer and palliative care contexts.
- The use of ePROs shows potential for contributing to patient-centred healthcare, including palliative care, as it can enhance the collection of various types of data directly from patients.
- The MyPal system for adults tested a complex intervention that included ePROs, wearable activity sensors, personalised motivational messages, medication reminders and access to cancer specific information whilst the MyPal Child study explored the use of a serious game.
- The fact that the introduction of digital health innovations is likely to encounter various organisational, administrative and logistical challenges.
- That all end-users should be involved before and during the development and testing phase of digital health innovations, to ensure high degrees of acceptability, usability and utility. (Payne 2022)
In his foreword to the eBook, Christoph Ostgathe, the President of the EAPC, noted how within palliative care we are thinking about how we can take advantage of digitisation and new technologies to best support patients and their families in palliative care.
You can access the eBook here on the MyPal website.