How to set a research agenda for a diverse and divided patient population: A qualitative study to assess the research needs of people with a visual impairment or ophthalmological disease

Background Patient involvement in research agenda setting has been studied in various initiatives. However, little insight is available on effective involvement strategies for both vulnerable, and for highly diverse and divided patient populations.
Objective To develop a research agenda for people with visual impairments or ophthalmological diseases, taking into account their specific needs for optimal involvement and the heterogenic nature of the patient population.
Methods The Dialogue Model was used, comprising the following four phases: exploration, consultation, prioritization and implementation. Eight homogenous focusgroups were organized and several additional interviews were conducted during the consultation phase. During the prioritization phase, medical research topics and societal and rehabilitation research topics were ranked in two questionnaires. Several strategies were applied to optimize the involvement of visually impaired participants.
Results To unify the diverse patient population, the topics of the research agendas were categorized under general themes (e.g. regenerative medicine, cause and mechanism of disease, and orientation and mobility). Some topics were formulated for specific ophthalmological diseases; however, during the consultation phase a substantive overlap in research topics was identified between the different patient groups. Additionally, by correlating the results of the data to the ophthalmological disease and severity of the impairment justice was done to the diversity of the needs of the patient groups.
Discussion This research will provide insight in strategies to set up a shared research agenda from the perspective of a highly diverse and divided patient population.