Editorial MyPal Autumn Newsletter: Health apps and their use in palliative care

The International Observatory on End of Life Care (IOELC) is pleased to be one of the 16 partners in the MyPal project consortium, as the team leading dissemination activities. This fifth MyPal newsletter presents the progress of work on the project and recognises some challenges facing researchers and clinicians.

The newsletter focuses on the use of health apps or eHealth technologies to support the interaction between patients with cancer and their healthcare providers through electronic patients reported ouctomes (ePROs). Interactive electronic health applications such as mobile phones and tablets can be used for monitoring, delivering, and evaluating health care. The use of health apps has shown tremendous potential to improve patients and providers’ access to real-time health information, miminise health errors and delays in reporting symptoms, and improve the quality of care provided1. For example, a recent systematic review on the application of eHealth in palliative care indicates that health apps serve as a complementary remote monitoring tool, provide patient education, and guide self-management1. The potential challenges of using these apps, such as reduced physical professional-patient relationships, are further discussed later in this edition.

MyPal Project Update

The spotlight article by our colleague Pantelis Natsiavas from the Centre for Research & Technology Hellas (CERTH) explains the role of this institution in leading the project, and provides an update on the MyPal project as a whole. Pantelis explains that CERTH, whose primary activity is developing eHealth interventions, coordinates the MyPal project, providing administrative, technical and scientific support for all consortium members. He believes that the outcomes of MyPal will make a real impact in the area of cancer and palliative care through eHealth, a new paradigm in healthcare. The MyPal apps could improve and make palliative care delivery more accessible through remote consultation, monitoring, and patient feedback. However, he notes that the COVID-19 pandemic has slowed down recruitment into the two studies due to the high demands on healthcare institutions.

MyPal Adults’ health app and potential challenges

The conduct of the clinical studies was equally interrupted. In their contribution to this newsletter, Michael Doubek, Jana Didi and Róbert Mazúr of University Hospital Brno give a detailed insight into the use of the MyPal app for adults with cancer (MyPal Adult Study) and the potential challenges of ePROs. They note the benefit of the apps in helping to detect the unmet needs of patients that would ordinarily be missed during routine, conventional clinical practice. Nevertheless, they draw attention to some of the ‘teething problems’ of introducing new health technologies, such as the unwillingness of older adults to learn to use technology, lack of access to smartphones, or preferences for in-person/telephone consultations.

The ethical issues of app use in health care

The use of apps has its limitations, such as knowledge about their use and issues with their application in complex disease management, raising distinct ethical issues. Therefore, addressing digital inequalities and promoting digital literacy is paramount. That is where the electronic patient-reported outcomes (ePROs), designed as part of the MyPal platform, may help.

As noted in the last two newsletters, COVID-19 has caused inevitable delays in executing the project. However, the global pandemic has also raised the demand for digital healthcare and telemedicine. The need for vulnerable patients, especially those living with cancer, to shield-to stay safe and prevent the spread- during COVID-19 further complicated access to healthcare services. In her contribution to this newsletter, Dr Tina Garani-Papadatos, from the National School of Public Health in Athens, underscores the ethical issues of app use in health care by highlighting the need to ensure safe, secure and responsible use of technologies to guarantee the safeguarding of the dignity and integrity of patients and their families, especially in the era of what she terms the “mHealth revolution”.

Digital ‘serious games’ in promoting patients’ compliance to care  

Several factors could hinder or promote the implementation of ePROs, including patient-related, team, organisational and professional-related factors2. An app may be a means of reporting real-time patient information to clinicians and could serve as a platform to help patients learn about their illness or even distract them from their distress3. Hence, Stefan Hoffmann and Robert Schraut’s explanation of the digital ‘serious games’ concept is not only timely but very important as it highlights how apps could be designed to maximise their use by patients. A serious game in the health care context is an interactive application that entertains whilst offering an opportunity for learning about a specific health condition. Due to its unique characteristic of combining entertainment with a goal-specific activity for the target audience to perform, serious games are sometimes known as ‘applied games’. Stefan and Robert, therefore, conclude by saying ‘the game part of the digital serious game needs to appeal to the audience to ensure their engagement, while the serious part needs to fulfil the purpose for which the app was designed’.

Clinicians experience of using MyPal4Kids app ‘AquaScouts game’

The AquaScouts game, a serious game in the MyPal project, targets children and adolescents from 6 to 17 years with cancer who are expected to regularly report their symptoms for 6 months. The goal of the AquaScouts game, like any health app, is to foster communication between children with cancer and their clinicians. Digital health interventions for reporting useful information for clinical care are also beneficial for the psychological health of children and their families3. Annette Sander, Anna Burns-Gebhart, Susan Dokutur and Kasra Mirzaie of Hannover Medical School give more details on clinicians’ experiences using MyPal4Kids app when working with young patients.

See the most recent publications from our project here.
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  1. Bienfait, , Petit, M., Pardenaud, R., Guineberteau, C., & Pignon, A. (2020). Applying M-Health to palliative care: a systematic review on the use of M Health in monitoring patients with chronic diseases and its transposition in palliative care. American Journal of Hospice and Palliative Medicine®, 37(7), 549-564.
  2. Graupner, C., Breukink, S. O., Mul, S., Claessens, D., Slok, A. H. M., & Kimman, M. L. (2021). Patient-reported outcome measures in oncology: a qualitative study of the healthcare professional’s perspective. Supportive Care in Cancer, 1-9.
  3. Archer, S., Cheung, N. H., Williams, I., & Darzi, A. (2021). The impact of digital health interventions on the psychological outcomes of patients and families receiving paediatric palliative care: A systematic review and narrative synthesis. Palliative Medicine, 02692163211026523

Dr Yakubu Salifu, Lecturer in Palliative Care, International Observatory on End of Life Care, Lancaster University, United Kingdom