Listen to the patients! Identifying CML patients’ needs using AI-driven methodologies (Preprint)

Abstract

To offer patients a successful therapy, various patient support programs exist. Pharmaceutical companies also increasingly see themselves in the role of actively supporting patients in their long-term therapy. For this, it is first necessary to find out and to understand the current needs of affected patients.

This paper focuses particularly on the disease chronic myeloid leukemia (CML). The central aim is to answer whether the needs of CML patients are adequately represented by current patient engagement offerings from the pharmaceutical industry. To enable this, it is first necessary to highlight the current Patient Engagement positioning of selected pharmaceutical companies; to find out whether pharmaceutical companies, their products and services play a role for CML-affected patients; and to analyze which key issues are meaningful from the patients' perspective.

To answer the above research questions, different methodologies were used. First, the relevant pharmaceutical companies and internet forums of the indication CML were identified by means of desk research. Subsequently, the user-generated content (UGC) in the identified forums was explored using AI-driven methodologies (unsupervised Machine Learning) like Topic modelling and Topic evolution analyses. This was done by analyzing topic models and the topic evolution.

The desk research shows that pharmaceutical companies mainly offer information about the disease and therapy options. The study of UGC analysis confirm that pharmaceutical industry plays an important role for CML patients. Especially drugs, therapy options and clinical trials are in focus. The central topics of the patients mainly refer to the disease CML itself, to possible therapy methods and related side effects, to the dosage of the active substances and to a change of therapy, which may be necessary due to therapy failure or resistance. In addition, stem cell transplantation is addressed.

In general, the needs of CML patients are adequately covered by the pharmaceutical industry. Nevertheless, there is still a need for improvement in the education of therapy options, drugs, and their side effects. Psychological support should also not be ignored. CML patients are often dealing with clinical trial results, so earlier involvement in clinical trials is also a potential need. Further research in this area is recommended.