Addressing barriers to global multidisciplinary stakeholder inclusivity: Lessons from global orofacial cleft research priority setting

BACKGROUND: Inclusivity in research priority setting is fundamental to capturing the opinion of all stakeholders in a research area. Globally, experienced healthcare workers often have deep insights that could impactfully shape future research, and a lack of their involvement in formal research and publications could mean that their voices are insufficiently represented. We aimed to modify the well-established Child Health and Nutrition Research Initiative (CHNRI) methodology to address barriers to inclusivity, which are particularly relevant in healthcare that requires highly multidisciplinary care.

METHODS: This global research priority-setting exercise for orofacial clefts adapted the CHNRI methodology to include research experts, clinicians from multiple disciplines, and non-technical stakeholders (i.e. patients and parents and non-governmental organisations (NGOs)) on a global basis. A multidisciplinary international steering group proposed and discussed methodological changes to improve inclusivity, including survey edits, subgroups for research questions, a demographics section, translation in French and Spanish, phrasing adaptation, and alternative dissemination techniques.

RESULTS: We received 412 responses and 1420 questions, spanning 78 different countries and 18 different specialties/groups. Challenges remain to improve representation of all groups, with the vast majority of answers (30%) being from surgeons and a comparatively small proportion from patient/parent groups (9%). This also includes managing responses in three languages, effective dissemination, and responses that were not worded as research questions.

CONCLUSIONS: This is one of the first CHNRI exercises to involve patients and parents, clinicians, and researchers in its first question submission stage, and the first ever to do so on a global scale. We describe our approach to addressing inclusivity challenges and report related demographic data to serve as a benchmark upon which we hope future CHNRI exercises will improve.