Professor Richard Rosenquist Brandell, PI for Karolinska Institutet, discusses his institution’s experiences as one of the clinical sites within the MyPal-Adult study.

What is your role in the MyPal project and how did you get involved?

Karolinska Institutet is involved as a clinical partner in the MyPal study, which aims to recruit 300 patients with chronic lymphocytic leukemia (CLL) and myelodysplastic syndrome (MDS) from five clinical sites. As PI at the Karolinska Institutet for the MyPal adult study, I have been responsible for setting up the study in Stockholm, together with senior haemato-oncologists and research nurses at Karolinska University Hospital.

For more than 15 years, Karolinska Institutet have had a longstanding collaboration with research groups in Thessaloniki, Milan and Brno, three of the five clinical sites for the MyPal adult study. Our joint efforts have focused on patients with CLL and include translational research projects as well as more clinically oriented projects. Hence, it was a natural development to get involved in the MyPal project to see if we could improve the quality of life and increase patient involvement in cancer care using a digital health intervention.

What do you personally consider to be the most pressing ethical issues when it comes to research within palliative care, such as that being done within MyPal?

When developing new personalized approaches within early palliative care, such as innovative tools to advance electronic patient outcome reporting, it is essential to consider that not all patients, in particularly older people, have the same experience of, or are comfortable with, digital techniques, such as the app and the activity tracker watch used within the MyPal-Adult study. This has been the case for a few patients who declined to participate in the study. Some patients are simply quicker to adopt digital solutions than others. Throughout the study, it has therefore been important to make sure that the patients feel comfortable with using the app for reporting their symptoms and responding to questionnaires.

Your institution is one of five clinical sites taking part in the MyPal-Adult study. In your experience, which ethical issues have come up as most prominent?

In the MyPal-Adult study, we have included patients with CLL and MDS, two malignancies that are usually diagnosed in older patients. Our main initial challenge at Karolinska was to manage the logistics of the study, from translating the documentation to testing and implementing the tools and software for use within MyPal. Most patients approached were positive about the study, although some patients with limited familiarity in using apps and smartphones, or those with other comorbidities, declined to participate. Since a large proportion of CLL patients followed at our hospital were included in different Sars-Cov-2 vaccination studies, this prevented study inclusion initially. Thanks to an amendment of the ethical approval, we could also offer these patients inclusion to the MyPal-Adult study.

In terms of equity of access to digital interventions such as the one being trialled in MyPal, what do you see as the most significant issues arising?

When approaching patients with CLL or MDS for inclusion in the MyPal Adult study, we have tried to identify patients that we believe are more likely to use digital solutions, such as smart phones and tablets, which of course can create bias in the results. On the other hand, I think this reflects the reality if we want to start using e-PRO systems in palliative cancer care. In terms of equity, we do need to develop alternative and simpler solutions for older patients less experienced with digital literacy, to ensure that they also can report their symptoms and needs to healthcare workers.

What are your hopes for the MyPal project, in terms for how it can contribute to palliative care (and research) being even more accessible and ethically sound?

I hope that this study will pave the way for the inclusion of patient-reported data directly in the electronic healthcare record. This will be essential to realize the full potential of personalized cancer medicine. In Sweden, electronic patient reported outcome data has recently been included in the electronic healthcare record at the national level for patients with a selected number of cancer diagnoses, and hopefully this will eventually come to include all cancer patients. As patients can already access healthcare through different apps, this has increased the usage of digital solutions in communicating with healthcare professionals.