Identifying patient’ communication needs:An empirical study on rare cancer in Italy

In healthcare literature, several papers have demonstrated that providing patients with detailed, continuous, and diversified information on their pathology - in a broad sense - has a significantly positive effect on patient empowerment and on care continuum effectiveness. In this respect, besides healthcare professionals, indirect communication (printed material, website, etc.) plays an increasingly important role. Web communication, in particular, has stated to be crucial: it is expected to be accessible to everyone and cost-saving for healthcare systems, to facilitate two-way interaction, and to promote patient-doctor-advocacy groups collaboration. Web communication, however, seems to suffer from two main limitations: 1. it can be unreliable if unsupervised; 2. it can be used to diffuse only some kinds of information. This work aims to address the extent of these limitations, examining patient propensity toward using web communication and identifying the patient needs that it could contribute to satisfy. For this purpose, we run an exploratory empirical study on a sample of rare cancer patients treated in a highly specialized research center in Northern Italy. We conduct semi-structured interviews on patient propensity and needs and analyze their transcriptions by means of text mining techniques. We clean and normalize the texts with automatic techniques for lexical- grammatical analysis and, finally, we synthesize the text contents with correspondence analysis (shortly, CA). CA allows us to identify the main concepts expressed by patients and to represent geometrically, in a reduced factorial space, the patients and the concepts. This simultaneous graphic representation of concepts and individuals allows visual representation of the association between patients and their information needs.