Periodic Reporting for period 1 - MyPal (MyPal: Fostering Palliative Care of Adults and Children with Cancer through Advanced Patient Reported Outcome Systems)
Reporting period: 2019-01-01 to 2020-06-30
Healthcare providers also encounter many challenges while caring for patients with cancer. Communication with patients is quite challenging and it often requires a sensitive approach, starting with the announcement of the cancer diagnosis and all the way through to treatment courses and possible relapses.
During the course of cancer the patients will experience a variety of physical and psycho-emotional symptoms; these will have to be addressed by a team of healthcare professionals specially trained in palliative care. The ultimate goal of palliative care is to improve the quality of life of patients that go through life-threatening diseases like cancer. For palliative care to be most effective, patients need to participate actively and communicate their personal needs as they arise.
In recent years, digital health technologies have provided significant aid in various aspect of healthcare, including palliative care. These technologies are often used to build modern and powerful digital health platforms addressed to patients, their carers and healthcare professionals, connecting them virtually.
This is where MyPal comes into play. MyPal is an ongoing initiative, aiming to develop and test digital health solutions for palliative care in cancer patients.
In a nutshell, MyPal is a digital health platform that makes uses of modern digital technologies and methods to support cancer patients, their carers and physicians in various ways. MyPal aims to facilitate patients to record and communicate their symptoms but also to improve their knowledge about their disease. Moreover, the MyPal platform promotes the active participation of patients in the management of their disease, including care decisions, and motivates patients to adhere to treatment via personalized messages.
With MyPal, adult patients can report their physical and emotional symptoms on their mobile using the MyPal-ADULT app; children with cancer do so while playing the MyPal-CHILD game on the family’s tablet. There is also a smartphone application for the carers of the children, while the treating physicians will be able to monitor patients via the MyPal web portal.
The MyPal solution will be tested by cancer patients, their carers and their physicians in 7 clinics in 5 European countries. If the test is successful, the MyPal solution will be promoted as part of routine palliative care of cancer patients throughout Europe with the ambition to improve their quality of life and outcome.
During the development of the MyPal system a fundamentally user-centered approach has been adopted in order to address some of the most important aspects for users; namely personalization, user engagement and user experience. In order to effectively elucidate the user requirements for the development of eHealth interventions for the palliation of cancer patients, the MyPal research team relied on a modern and multi-modal methodology. Specifically, the scientific literature on unmet palliative care needs was reviewed, the palliative care expertise within the consortium was exploited and a participatory design paradigm was adopted. Within this context, a series of focus group discussions were conducted with adult cancer patients and children with cancer and their parents in all participating clinical sites for the purposes of User Experience Research and Validation Procedures.
The proposed methodology surpasses the already established state-of-the-art services; it would be useful and can easily be transferred, as-is or with variations, to other research efforts that attempt to develop eHealth systems for palliative care or other healthcare areas.