The EAPC are really delighted to be a part of the MyPal project consortium. Despite a global pandemic, causing some short but inevitable delays, the work of the consortium continues. This third MyPal newsletter charts the progress of the work on the project. In particular this edition focuses on the work being undertaken by partners in Greece, Sweden, Czech Republic, Italy and in Germany.
The work of MyPal focuses on patient reported outcomes (PRO) by using an ePRO-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 haematological malignancies. The clinical studies are being conducted in diverse healthcare settings in six clinical sites across five European countries.
If you would like more information on ePRO’s, Dr Christina Karamanidou, who works with the project lead team CERTH, gives more detail in her contribution to this newsletter. Christina explains the rationale for the choice of tools utilised in the study and explains how the findings could ultimately improve patient care.
Brno Clinical Center in the Czech Republic is the only MyPal partner involved in both the adult and child MyPal studies. Work on the MyPal project is being undertaken through both the Department of Internal Medicine, Haematology and Oncology (IHOK) and at the Paediatric Oncology Department in the Children’s hospital. In his contribution to this newsletter Dr Petr Lokaj sets out the role of this organisation in the project.
Having been involved in several European Union funded projects, Professor Richard Rosenquist Brandell from the Karolinska institute in Sweden, clearly sets out his hopes for the outcomes of the MyPal study. Richard rightly brings the focus back to the person with cancer and hopes that MyPal will ultimately lead to significantly increased utilisation of patient-reported data in cancer care and improved patient empowerment. A large part of the recruitment for the adult MyPal study will take place at the Karolinska University Hospital. For more information on the participation of the Karolinska institute in this study please see Richard’s contribution.
Paediatric Haematology-oncology consultant Dr Annette Sander from Hanover Medical School shares details of her involvement in MyPal and the development of the MyPal paediatric ePRO tool and its implementation in the clinical study MyPal4Kids.
Dr Lydia Scarfo and Professor Paolo Ghia from Milan, Italy discuss the important role of ePRO’s in clinical care and the opportunities such assessment of outcomes can provide. In particular they highlight the psychosocial issues that can be detected by using the app at home, an aspect sometimes overlooked in outpatient visits. This valuable information provides the opportunity to initiate important, if at times challenging, conversations.
Dr's Julie Ling & Cathy Payne
European Association for Palliative Care (EAPC)