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MyPal: Fostering Palliative Care of Adults and Children with Cancer through Advanced Patient Reported Outcome Systems

Periodic Reporting for period 3 - MyPal (MyPal: Fostering Palliative Care of Adults and Children with Cancer through Advanced Patient Reported Outcome Systems)

Okres sprawozdawczy: 2022-01-01 do 2022-12-31

Following a cancer diagnosis, patients face a series of challenges. They have to make difficult decisions about treatments, deal with an additional daily burden and cope with fear and anxiety associated with a life-threatening disease. Cancer is a challenging experience for both adults and children, as well as their families, caregivers and friends as patients typically experience a variety of physical and psycho-emotional symptoms.
Preferably, these challenges 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.
To this end, 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. COVID-19 pandemic has highlighted all these challenges.
In recent years, digital health technologies advances 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, aiming to develop and test digital health solutions for palliative care in cancer patients focusing on the Patient Reported Outcomes (PRO) paradigm supported via eHealth technical means, i.e. ePRO paradigm. In a nutshell, MyPal project builds and evaluates an eHealth platform that makes uses of modern digital technologies and methods to support cancer patients, their carers and physicians under real-world conditions. MyPal focused on facilitating 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.
Via the MyPal platform, adult patients can report their physical and emotional symptoms via their mobile phone/tablet device 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 are able to monitor patients and their reported information via the MyPal web portal.
The MyPal solution has been tested by cancer patients, their carers and their physicians in 7 clinical sites across 5 European countries.
Based on the conducted studies, the main conclusions is that while the use of eHealth technologies is identified as a feasible way to support the provided healthcare services with a positive impact on patient treatment, still, there are a lot of things to be done in order to apply it in wide scale. Key things to be highlighted are the need for better clinical professionals’ education programmes, better technical infrastructures and also improved reimbursement schemes to facilitate the uptake of eHealth tools as part of everyday clinical care.
MyPal platform’s design was based on patient centred design activities (focus groups etc.) and has been developed engaging end-users in the whole spectrum of testing and validation activities. Furthermore, well-defined clinical study protocols have been elaborated and published, along with several technically oriented scientific publications depicting the technical developments of the project. Two clinical studies have been executed engaging more than 250 patients, namely a Randomized Clinical Trial for adults and an observational study for children. Finally, dissemination and public discussion activities were also organized by the MyPal consortium, including a workshop conducted in London on October of 2022.
The MyPal ePRO-based interventions were implemented in 7 participating clinical sites in 5 European countries. A wide spectrum of PRO data were collected using the newly developed MyPal platform which included mobile apps to collect data from patients and their carers, a video game used by children to collect ePRO data in a friendly manner and a central server where advanced analytics are presented to support healthcare professionals decisions. The data collected were analyzed aiming to conclude regarding the impact of the use of eHealth technologies to support palliative care with encouraging results.

Based on these activities, a number of recommendations were identified and elaborated regarding the adoption of eHealth technologies in the context of palliative care. Their prioritization is not hierarchical as the priorities in different settings (or for different systems) might also differ.

Recommendation 1: Emphasize on usability for non-typical end-users/patients
Recommendation 2: Enhance data quality via technical and non-technical measures
Recommendation 3: Ensure service access equity for all social groups
Recommendation 4: Integration of technical tools in the treatment practice guidelines
Recommendation 5: Training and education especially for healthcare professionals
Recommendation 6: Co-design of technical tools with active participation of all stakeholders
Recommendation 7: Development of national policy strategies for eHealth adoption
Recommendation 8: Technical tools (e.g. mobile apps) should emphasize on unobtrusiveness
Recommendation 9: Both software tools and relevant processes should be “personalized”
Recommendation 10: Information security and respect of privacy should be emphasized
Recommendation 11: Reimbursement schemes for eHealth tools should be developed to enhance their adoption
Recommendation 12: Novel certification schemes should be deployed to increase “trust” on eHealth tools