Digital Life Stories of People With Cancer: Impacts on Research

Abstract

This article examines the influence that digital life stories (DLS) can have on cancer research, using the PARCA1 project as an example. After describing the theoretical framework of DLS, we present the PARCA1 project. The PARCA1 project was anchored in the French context (Grand Est region) and aimed at producing knowledge on patients’ experience of the cancer pathway through DLS. It involved 10 patients chosen to favor heterogeneity in profiles and experiences of illness. The paper describes the digital tool and the life stories methodology used to accompany the DLS. Next, it presents the methods and strategies used by participants to complete their DLS and the relationship between people with cancer and the accompanying researcher. Following this, we present (1) the impact of DLS on people with cancer, i.e., their progressive engagement in research, and (2) the impact on research, i.e., the methodological impact of people with cancer on research. In the discussion and conclusion, we explore how DLS can impact individuals who engage in them and their role in research.