The BCH message banking process, voice banking, and double dipping

Abstract

Significant advances have been made in interventions to maintain communication and personhood for individuals with neurodegenerative conditions. One innovation is Message Banking, a clinical approach first developed at Boston Children's Hospital (BCH). This paper outlines the Message Banking process as implemented at BCH, which includes the option of "Double Dipping," where banked messages are mined to develop personalized synthesized voices. More than a decade of experience has led to the evolution of six core principles underpinning the BCH process, resulting in a structured introduction of the associated concepts and practices with people with amyotrophic lateral sclerosis (ALS) and their families. These principles highlight the importance of assigning ownership and control of the process to individuals with ALS and their families, ensuring that as a tool it is empowering and offers hope. Changes have been driven by feedback from individuals who have participated in the BCH process over many years. The success of the process has recently been extended through partnerships that allow the recorded messages to be used to develop individual personalized synthetic voices to complement banked messages. While the process of banking messages is technically relatively simple, the full value of the process should be underpinned by the values and principles outlined in this tutorial.