Can you tell us a little bit about yourself and your background?

Since 2017, I am Professor in Clinical Genetics at the Department of Molecular Medicine and Surgery, Karolinska Institutet, and work as a senior physician at Clinical Genetics, Karolinska University Hospital. I am also director of the Diagnostics Development Platform within Science for Life Laboratory (SciLifeLab), a national infrastructure for high-throughput technologies, and main coordinator of the national precision medicine initiative, Genomic Medicine Sweden.

I received my medical degree and PhD degree at Umeå University, Sweden, and undertook a postdoctoral period at the Dept of Pathology, Frankfurt am Main, Germany. I started my own research group at the Department of Immunology, Genetics and Pathology, Uppsala University, in 2000, focusing on advanced molecular profiling of lymphoid malignancies. I became a specialist in Clinical Genetics 2004 and Professor of Molecular Haematology in 2007.

I have previously been involved in a number of EU projects, which have been focused on developing novel diagnostic tools and/or exploring the impact of big data in developing clinical decision support for patients with haematological malignancies.

Can you tell us about your current research?

Our research is focused on chronic lymphocytic leukaemia (CLL), the most common leukaemia among adults and a focused disease within MyPal, that is known for being highly heterogeneous in terms of both clinical manifestation and outcome. Taking advantage of our large, well-annotated cohort of CLL patients, we apply a range of high-throughput technologies, including next-generation sequencing and single-cell technology, to investigate clinically relevant patient subgroups and follow their disease evolution. We hope that this comprehensive approach will lead to significantly improved risk stratification in CLL, and the identification of new predictive biomarkers and treatment strategies in this still incurable disease.

How did you get involved with MyPal?

For almost 15 years, we have a longstanding collaboration with research groups in Thessaloniki, Milan and Brno, the three other clinical sites for the MyPal study in adult patients. Our joint efforts have focused on CLL and include large-scale 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 can improve the quality of life and increase patient involvement in cancer care using a digital health intervention.

What is your role on the MyPal project?

Karolinska Institutet is involved as a clinical partner in the MyPal study, which aims to recruit 300 CLL and MDS patients in total from four clinical sites, i.e. Milan, Thessaloniki, Brno and Stockholm. As PI at KI for the MyPal study, I have been responsible for setting up the study in Stockholm, together with senior haemato-oncologists and research nurses at Karolinska University Hospital. While CLL patients will be recruited at the Solna site (north of Stockholm), MDS patients will be included from the Huddinge site (south of Stockholm). It will be exciting to apply the digital platform developed within MyPal, which includes tools and apps for self-reporting and symptoms tracking as well as a web interface for healthcare professionals.

Image of the Karolinska Institute building

The Karolinska Institute building

What are the main challenges you think the project faces?

When I have presented this interventional study at the hospital, doctors and nurses have been very supportive and believe this is an important way forward to increase the usage of patient-reported data in oncology care. Our main challenges at Karolinska have been to manage the logistics of the study, from translating the documentation to testing and implementing the tools/software that we will use within MyPal. We are currently preparing a rehearsal where fake patients will test the different steps of the intervention before we can start the actual patient inclusion. Due to the Covid-19 pandemic, however, the regional ethics board had to prioritize covid-19-related applications and we are still awaiting their decision. Once the study is up and running, it will be important to make sure that the patients feel comfortable using the app for reporting their symptoms and responding to follow-up questionnaires. It will also be important to identify any problems with the app at an early stage. My hope is that this study will lead to significantly increased usage of patient-reported data in cancer care and improved patient empowerment.