The Research Priorities of People with Visual Impairments in the Netherlands

Introduction: Despite the relatively high prevalence and challenges of visual impairments, limited funding is available for ophthalmologic research in the Netherlands. The research needs of people with visual impairments could aid the ophthalmological research community to optimally distribute research resources. The objective of the study presented here was to identify daily life problems, concerns, and wishes for future research from people with ophthalmological disorders, visual impairments, or deafblindness in order to set a research agenda that provides directions for future ophthalmology research. Methods: A four-phase participatory research approach was carried out using mixed methods to stimulate needs-articulation. Eight focus group discussions, seven feedback meetings, and seven interviews were organized, in which 89 consumers were consulted. Surveys to prioritize the topics were developed for both the medical and sociopsychological topics, which were completed by 784 and 631 respondents, respectively. Results: For the medical research agenda, research directly aimed at the cause of the ophthalmological disorders was considered more important than research aimed at improving quality of life. The themes "new and regenerative medicine," "cause and disease mechanism," "prevention and diagnosis," and "improvement of current treatments" were prioritized as high. For the sociopsychological agenda, needs concerning the "improvement of technologies for people with visual impairments" and "navigation, orientation, and accessibility of public space" were considered top priorities. Discussion: The identified research needs were relatively uniform across different consumer groups, providing opportunities for joint action. The research agenda included themes that can be taken up by "traditional" ophthalmological research, more broadly defined health care-related research, and more policy-influencing strategies. Implications for practitioners: The research needs could help researchers and policymakers in ophthalmology and visual impairment research to guide their research focus and legislation priorities.