Using a 3 stage process to create 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 using a 3 stage framework; 1) evidence review and consultation 2) co-production of a research communications plan with stakeholders (including 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 would be 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 health service staff 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 approach will inform our future directions including creation of an electronic research contact list easily accessible by consumers of the children’s health service. PLAIN ENGLISH SUMMARY: Recruiting enough children to participate in research studies can be challenging. Establishing a registry or list of young people willing to be contacted to participate in research is one way of addressing this problem. At our children’s health service, we wanted to explore the idea of developing a research contact list and we were particularly keen to involve consumers and community members in this process, which involved: 1.Reviewing other examples of research contact lists and consulting with a range of people, including consumers and community members, 2. Co-producing a research communications plan with parents, young people, health service staff and research staff, including a draft research information brochure for families, and 3. Testing the acceptability of the brochure by surveying parents or carers who attended outpatient clinics or the hospital Emergency Department, and conducting follow up telephone calls with them. 367 parents or carers completed a 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 raised by consumers and health professionals in the first stage of the project were not found to be a concern for the parents or carers surveyed. Responses showed research communications and a future contact list should be available in electronic form. These findings will inform the future creation of an electronic research contact list, easily accessible by consumers of the children’s health service.