Advanced patient-reported outcome systems in the palliative care of adults and children with cancer – launch of a new European project: MyPal

Dr Vassilis Koutkias (Greece), Dr Kostas Stamatopoulos (Greece), Professor Sheila Payne and Dr Sean Hughes (UK) unveil a new European project to enable adults and children with cancer to engage more actively with their illness through the use of digital apps and games.

Bottom row, clockwise: Dr Kostas Stamatopoulos, Dr Vassilis Koutkias, Professor Sheila Payne, Dr Sean Hughes.

On 17 to 18 January 2019, clinicians, researchers and technicians from seven nations met in Thessaloniki, Greece, for the kick-off meeting of a new European Horizon2020 project, MyPal, coordinated by Dr Vassilis Koutkias from the Institute of Applied Biosciences (INAB). This project will develop and test the efficacy of innovative digital technologies – apps and games – applied to patient-reported outcome (PRO) systems. Also present at the meeting were representatives from the European Association for Palliative Care (EAPC) and the International Children’s Palliative Care Network (ICPCN) who are participating in the MyPal Consortium. The project will run for 42 months from January 2019.

Patient-centred care is at the heart of MyPal

A central aim of the interventions developed by MyPal will be to empower cancer patients and their family members throughout the disease trajectory by more efficiently capturing facets of their condition and communicating these to their professional caregivers. We anticipate that this will provide more timely and accurate information on fluctuations in the patient’s state and general wellbeing, so allowing a more effective healthcare provider response with obvious positive impact on wellbeing and overall quality of life, including social functioning.

This year, MyPal technological experts will work with clinical partners in developing the apps and games that will be tested during the project. These PRO-based interventions will be tested in a randomised controlled trial with adults and in an observational study with children. MyPal represents a shift from passive patient reporting based on conventional PRO approaches to active patient engagement, using modern technology to address the complex challenges faced by those with advanced cancer.

Developing apps for adults and digital games for children

MyPal provides many opportunities to improve palliative care for adults and children living with cancer. Developing apps and digital devices that patients will like to use presents challenges. The apps will be specially tailored to appeal to adults or children. Games built on PROs for young children clearly need to be adapted – or completely different – to appeal to older children and teenagers. These new apps will need to be embedded in existing professional communication arrangements and to fit with current clinical working practice.

We will provide regular updates about MyPal on our website (www.mypal-project.eu)and on our other social media platforms, so follow us and keep informed!

Join us in Berlin…
At the 16th EAPC World Congress in Berlin, we will have a meeting with other new H2020project colleagues to exchange information on progress. People who are interested in MyPal are welcome to come and join us on Friday 24 May between 10.30 and 11.15, room 5, second floor.

Links

More info on the authors…

Dr Vassilis Koutkias (MyPal Project Coordinator) is a Senior Research Scientist at the Institute of Applied Biosciences (INAB) in the Centre for Research & Technology, Hellas (CERTH), Thessaloniki, Greece.
Dr Kostas Stamatopoulos (MyPal lead on intervention design for the adult study) is a Haematologist and Director of INAB, CERTH.
Professor Sheila Payne (MyPal lead on the dissemination work package and a member of the MyPal management group) is Emeritus Professor, International Observatory on End of Life Care, Lancaster University, UK.
Dr Sean Hughes is a Lecturer in Palliative Care, International Observatory on End of Life Care, Lancaster University, UK, and a member of the dissemination work package.

Are you coming to Berlin?
If you’re attending the 16th EAPC World Congress in Berlin, please come along to the Open Meeting and find out more about MyPal and other new H2020 projects. New EU-funded Palliative Care Research: an Overview of all Projects Launching 2019 takes placeon Friday 24 May at 10.30 to 11.15 in Room 5, second floor.

Browse the full scientific programme for the EAPC World Congress here – now available with interactive programme tool. Start perusing and planning now! Register here.

This entry was posted in EAPC COLLABORATIVE PROJECTS, MyPal Consortium, PATIENT & FAMILY CARE and tagged , , . Bookmark the permalink.

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