Using Social Media as a Research Tool for a Bespoke Web-Based Platform for Stakeholders of Children With Congenital Anomalies: Development Study.

Building and maintaining a multilayered online forum for coproduction and information sharing is challenging. Technical considerations include understanding the functionality and versatility of social media metrics. Social media offers valuable, easily accessible, quantitative, and qualitative data that can drive the reciprocal process of forum development. The identification and integration of the needs of the ConnectEpeople e-forum was a key driver in the dissemination of useful, meaningful, and accessible information. The necessary dedicated administration to respond to requests and posts and collate data required significant time and effort. Participant safety, the development of trust, and the maintenance of confidentiality were major ethical considerations. Discussions on social media platforms enabled parents to support each other and their children. Social media platforms are particularly useful in identifying common family needs related to early childhood development. This research approach was challenging but resulted in valuable outputs requiring further application and testing. This may be of particular importance in response to COVID-19 or future pandemics. Incorporating flexible, adaptable social media strategies into research projects is recommended to develop effective platforms for collaborative and impactful research and dissemination.