Background Minimising harm to infants caused by medicines at home (MINIMEDs) is a study investigating how we can improve the support given to parents and caregivers who need to give prescribed medicines safely to their children at home. The first stage of this research has been to conduct a systematic review of all the existing studies that have explored the experiences of parents and caregivers who administer medicines to their children at home.
Aims Our aim was to conduct meaningful public involvement during the systematic review to ensure the relevance and quality of the research.
Methods We used two main sources of guidance in addition to academic supervision. The first was a national document produced by the National Institute for Health and Care Research (NIHR).1 The second was a public involvement methods paper published by PhD students who had studied medicines safety.2 We took an iterative approach to public involvement depending on the stage of the research.
Public involvement was conducted using four types of activities: conducting a focus group (n = 1 group), meeting individual public advisors (n = 4 families), establishing and running meetings for a project specific public advisory group (n = 4 meetings), and attendance at community led events (n = 5 events).
Results These activities have influenced the research in numerous ways. Prior to starting the research, public advisors helped with identifying and setting a relevant research question during a focus group activity (study design – research question). This was refined with further engagement at community events. Individual advisors gave feedback about the feasibility of using patient safety concepts for this research (study design – theoretical approach) and provided stories and imagery that were used as part of the successful funding application (study design – funding).
As for conducting the systematic review, individual advisors helped extract data from studies that were included in this review (data analysis – data extraction). Individual advisors and the public advisory group reviewed extracted data and helped interpret these into findings (data analysis – interpretation). Community engagement events helped to provide perspectives for the research and relevance to their lived experiences (data analysis – triangulation).
Finally, after finishing the review, individual advisors reviewed and edited manuscripts to ensure readability and accessibility of the findings of the review (dissemination – producing peer reviewed published manuscripts). This was included in our published study protocol.3
Conclusion Public involvement has been achieved throughout the review. This has significantly improved the quality of the research. This will continue during the review of publication and dissemination phases of the research to ensure the potential impact of this work is maximised.
CORE (COnnecting REpositories)
CORE (COnnecting REpositories)