Evidence Review, Co-Production and Prototyping A Process of Creating a Consumer Research Contact List in a Paediatric Health Setting: The PARTICIPATE Project

Abstract The impact of child health research can be far reaching; affecting children’s immediate health, their adult health, the health of future generations and the economic wellbeing of countries. Consumer and community involvement is increasingly recognised as key to successful research recruitment. Systematic approaches to research recruitment include research registries or research contact lists. Objective: Develop a process of creating a consumer research contact list for participating in future research opportunities at a children’s health service.Methods: A healthcare improvement approach used a 3 stage framework; 1) evidence review and consultation 2) co-production of a research communications plan with stakeholders and consumers, including a draft research information brochure 3) prototyping involved iteratively testing the brochure, surveying parents or carers who attended outpatient clinics or the hospital Emergency Department, and conducting follow up telephone calls.Results: There was overall support for the creation of a research contact list, but some unknowns remain. 367 parents or carers completed the survey and 36 participated in a follow up telephone call. Over half were willing to join a research contact list and more than 90% of the children of parents or carers surveyed were not currently participating in research. Several potential barriers identified by stakeholders were dispelled. Research communications and a future contact list should be available in electronic form.Conclusions: There was strong support for creating a research contact list. The co‑production approach will inform our future directions including creation of an electronic research contact list easily accessible by consumers of the children’s health service