This fourth MyPal newsletter continues to describe the progress of the work on the European Union funded MyPal project. MyPal focuses on patient reported outcomes (PRO) by using the PRO-based intervention. The project aims to demonstrate and validate the use of a web-based or mobile application in two clinical studies using ePRO’s (electronic patient reported outcomes). The first is a randomised controlled trial with adults with haematological malignancies and the other an observational study for children with solid tumours and haematologic malignancies. In this edition we have contributions from partners working in both clinical studies, both the adult and children’s components. We also have a related guest article from Dr Amara Nwosu, a physician and researcher at the International Observatory on End of Life Care and Digital Technology Editor for the journal Palliative Medicine (SAGE Publications).
MyPAL Adult Study Update
In her contribution, Dr Lydia Scarfò, Università Vita-Salute San Raffaele and IRCCS Ospedale San Raffaele, Milan, Italy, describes the development of the MyPAL Adult study, from its inception in January 2019, to the enrolment of the first trial participants in January 2021. She reflects on the challenges faced by the technical and clinical partners in the development of study materials and the study adoption and recruitment across multiple clinical sites during the COVID-19 pandemic and the impact this has had.
Green light for starting MyPal4Kids Study
Marcel Meyerheim is a researcher working at Saarland University in Germany. In his contribution, Marcel provides an overview of the game developed specifically for children to help them identify and report symptoms. The game, AquaScouts, is a mobile app which includes a serious game and has been developed as part of a novel digital health platform. Marcel explains how work has begun testing the app in an observational feasibility study known as “MyPal4Kids”.
The current opportunities and challenges for the use of communication technologies in palliative care context
In a closely related article, Dr Amara Nwosu explores how the COVID19 pandemic has led to rapid adoption of a range of digital technologies in both public and professional arenas. He explores the roles that clinicians, researchers and policy makers play in ensuring that technology is appropriately used to build and shape more effective and efficient palliative care services during a global pandemic.
Cathy Payne, European Association for Palliative Care, Vilvoorde, Belgium