What do blind people "see" with retinal prostheses? Observations and qualitative reports of epiretinal implant users

Introduction: Retinal implants have now been approved and commercially available for certain clinical populations for over 5 years, with hundreds of individuals implanted, scores of them closely followed in research trials. Despite these numbers, however, few data are available that would help us answer basic questions regarding the nature and outcomes of artificial vision: what do participants see when the device is turned on for the first time, and how does that change over time? Methods: Semi-structured interviews and observations were undertaken at two sites in France and the UK with 16 participants who had received either the Argus II or IRIS II devices. Data were collected at various time points in the process that implant recipients went through in receiving and learning to use the device, including initial evaluation, implantation, initial activation and systems fitting, re-education and finally post-education. These data were supplemented with data from interviews conducted with vision rehabilitation specialists at the clinical sites and clinical researchers at the device manufacturers (Second Sight and Pixium Vision). Observational and interview data were transcribed, coded and analyzed using an approach guided by Interpretative Phenomenological Analysis (IPA). Results: Implant recipients described the perceptual experience produced by their epiretinal implants as fundamentally, qualitatively different than natural vision. All used terms that invoked electrical stimuli to describe the appearance of their percepts, yet the characteristics used to describe the percepts varied significantly between participants. Artificial vision for these participants was a highly specific, learned skill-set that combined particular bodily techniques, associative learning and deductive reasoning in order to build a "lexicon of flashes" - a distinct perceptual vocabulary that they then used to decompose, recompose and interpret their surroundings. The percept did not transform over time; rather, the participant became better at interpreting the signals they received. The process of using the device never ceased to be cognitively fatiguing, and did not come without risk or cost to the participant. In exchange, participants received hope and purpose through participation, as well as a new kind of sensory signal that may not have afforded practical or functional use in daily life but, for some, provided a kind of "contemplative perception" that participants tailored to individualized activities. Conclusion: Attending to the qualitative reports of participants regarding the experience of artificial vision provides valuable information not captured by extant clinical outcome measures. These data can both inform device design and rehabilitative techniques, as well as grant a more holistic understanding of the phenomenon of artificial vision.