Christina Knuepffer, Helen Chenery et al on 'Ethico-legal considerations involved in the remote monitoring of spontaneous speech and conversations via smartphone applications', Colorado, 12 November 2015
Who: Christina Knuepffer (presenter), Jacki Liddle, Helen Chenery, Adrian Carter, Wayne Hall, David Ireland, Adam Vogel, Deborah Theodoros, Peter Silburn, Daniel Angus, Janet Wiles, Simon McBride.
When: 4.30-5.30pm, 12 November, 2015
Where: ASHA Annual Convention, November 12-14, 2015 at the Colorado Convention Center in Denver, Colorado
The remote collection of speech and conversation data through smartphone applications can provide unique data to Speech-Language Pathologists for a variety of reasons. Firstly, it has been reported that the analysis of spontaneous, naturalistic speech can reveal voice and speech impairments that might not be evident in data collected under laboratory conditions (Sidtis et al., 2012). Therefore, the collection of audio recordings of natural speech can provide unique datasets for the analysis of parameters of interest outside the confinement of the artificial conditions typically seen in speech research, thereby resulting in higher ecological validity (Perkell, 2012, 2013; Sidtis et al., 2012). For example, deep brain stimulation (DBS) surgery was reported to adversely affect speech intelligibility in conversational, but not task-based speech (Sidtis et al., 2012). Secondly, the ongoing monitoring of healthy and clinical populations via smartphone applications has the potential to deliver powerful, unprecedented data on intra-individual fluctuations in voice, speech and communication parameters over time.
Obtaining such data is a current priority in conditions such as Parkinson's disease where speech-language-related symptoms fluctuate significantly across the span of each day as well as declining progressively over the course of months and years. Longitudinal speech data conveniently collected via a smartphone has the potential to complement clinician-based assessments, providing data beyond patient self-report and beyond one-off speech assessments on the day of the appointment. The obvious merit of monitoring naturalistic speech and conversations over time has lead to an increasing number of research teams setting out to collect such data - among them our multi-disciplinary team of experts in Speech Pathology, Occupational Therapy, Engineering, IT, Neuroethics, Psychology and Language Neuroscience. As a team, we are interested in remotely monitoring speech in people with Parkinson's disease as well as collecting referential data from healthy individuals.
The remote collection of naturalistic speech and conversation data can only be conducted under careful consideration of the ethico-legal conundrums involved in the collection of this type of data. Due to the relative novelty of this type of research, no unified guidelines exist to date and research teams are commonly finding themselves confronted with ethico-legal issues that they had not anticipated. Over the course of the past two years, our team went through the process of applying for ethical approval, developing a smartphone application for remote data collection, setting up a secure server for data storage, collecting pilot data using the remote monitoring system and analysing this data. Along the way, our team was faced with anticipated as well as unanticipated ethico-legal conundrums.
This presentation will discuss the various steps involved in setting up a remote monitoring system for speech and conversation recordings, focusing on ethico-legal aspects that require consideration in the following processes: - data acquisition, - obtaining conversation partner consent, - data uploading and storage, as well as - manual and technology-assisted data analysis and - sharing of data within a research team. Real-life examples from our experience in remotely collecting conversation data in Australia will be discussed and future needs and directions in the field will be pointed out. The presentation will be of particular interest to researchers who are planning to set up their own experiments involving the remote, smartphone-assisted collection of naturalistic speech and conversation data. But it will also be of interest to the lay-person who would like to learn more about ethico-legal issues in mobile health.
It is the aim of this presentation to provide guidance to other research and clinical teams in the hope that increased awareness of ethico-legal conundrums ahead might equip others to set up their projects accordingly. As a result of the presentation, the audience will have gained insights into each step of the way in the process of remotely collecting natural speech and conversation data under consideration of ethico-legal aspects involved. Members of the audience will additionally leave this presentation with an understanding of the difference between remotely collecting speech and conversation data from healthy individuals and collection of such data from individuals with neurogenic communication disorders and/or cognitive impairment.