C30 ALS COMMUNICATION RESEARCH: FROM THE LABORATORY TO THE LIVING ROOM.
BLOCH S
University College London, United Kingdom
E-mail address for correspondence: [email protected]
Keywords: communication, dysarthria, collaboration
People with ALS can experience a range of communication impairments, most typically, but not exclusively, an acquired progressive motor speech disorder (dysarthria) characterised by reduced respiratory, phonatory and articulatory functioning. A review of contemporary research relating to dysarthria and communication reveals a number of discrete fields of investigation, including:
Neuro-anatomical research: investigating the relationship between motor/sensory neurological functioning and related anatomical sites. Physiological research: investigating the movement of, and interaction between, different speech subsystems. Perceptual and acoustic research: investigating the physical properties of dysarthric speech and how they are heard. Intelligibility/comprehensibility research: investigating how listeners perceive dysarthric speech. Assistive technology and augmentative and alternative communication research: investigating how communication technology can be used by people with dysarthria. Autobiographical/biographical research: investigating how people with dysarthria experience life. Participation research: investigating the effects of dysarthria on how people engage with the social world. Social interaction research: investigating the consequences of dysarthria on everyday interaction.
Findings from this spectrum of research fields provide a wealth of knowledge, but researchers and clinicians can currently only assume links between findings from impairment based research and the consequences of ALS on everyday life. Thus, whilst our (laboratory) knowledge of normal and disordered speech is now extensive, gaps remain with reference to adaptations over time and the effects of reduced intelligibility on everyday (living room) communication and participation both for individuals living with ALS and the people with whom they interact.
As indicated by the range of research activities above, it will not be possible to fully understand or resolve the characteristics and impact of dysarthric related communication through one research programme alone. Rather the challenge must be for a meaningful understanding of ALS dysarthria and its relationship to body structure, activity and participation. Crucially, there is an emerging need for much closer collaboration between people with ALS, clinicians and researchers. Through closer working there is a much greater chance of developing more meaningful and relevant questions as well as, ultimately, meaningful answers.
C31 ADVANCES IN COMMUNICATION TECHNOLOGY
HORVITZ E
Microsoft Research, Kirkland, Washington, WA, USA
E-mail address for correspondence: [email protected]
No abstract received.
C32 ALS ONLINE: THE INTERNET AS A TOOL FOR PATIENT EMPOWERMENT
WICKS P
PatientsLikeMe Inc, Cambridge, Massachussetts, United States
E-mail address for correspondence: [email protected]
Keywords: Online communities, patient empowerment, patient education
In the information age, doctors are no longer the sole gatekeepers of medical knowledge. The internet offers people with ALS the chance to find out more about their condition, read the latest research findings, share their experiences with other patients, and communicate with healthcare professionals. Historical research suggests that there was an active online community in ALS since the early 1990's, with a Usenet group being set up in 1996. As internet access became more widely available, there was a rapid growth in the number of patients sharing their illness narratives online and sharing experiences of experimental treatments. This has not been without risks, however, and untold thousands of patients have paid for experimental treatments of dubious validity marketed to them over the web.
Over time there has been a degree of continuity and handing down of knowledge which has taught newly diagnosed patients to be more critical consumers of information provided online, even to the point that patients are now critiquing research studies or even designing their own. There has also been a shift from the “Web 1.0” concept where a reputable institution such as a hospital or non-profit provides static information for download, to the more recent “Web 2.0” movement where the majority of content is user-generated and moderated.
A key theme has been patient empowerment; the web allows lay patients to learn more about their disease and become more engaged in the process of their treatment. At the next level, patients are able to talk to one another to suggest, reassure, or warn other patients about the pros and cons of their decisions.
The future of the web in ALS is collaborative online research. Patients are already reacting to research studies, for instance by seeking to be prescribed lithium off-label in response to a recent Italian study, submitting their self-report ALSFRS-R data at PatientsLikeMe in numbers 10 times that of the original study. There may also be a role for telemedicine in continuing to monitor progression past the point that clinic visits are feasible, and online networking of physician's research efforts in programs such as the ALSOD database.