Abstracts

Rationale: Selecting an impactful and meaningful clinical research project that will lead to improved health and outcomes for children with epilepsy can be a challenging task for researchers.   Involving multiple stakeholders to generate ideas and questions of high interest to a diverse audience is one approach for addressing this challenge. Methods: We conducted a research question prioritization process using online software (codigital.com; Codigital Limited, London).  The prompt focused on selection of fundable research: "Which of the following research studies is most likely to secure funding from a public or private sponsor (e.g., PCORI, NIH, AHRQ, Industry, Foundations)?" We seeded the prioritization process with 20 questions, then invited parents, researchers, and clinicians to visit the site.  The software presented users with pairs of research questions and asks which is preferred in terms of funding potential.  Users were also able to propose edits to questions of up to 40% of the text — these edits are then voted upon by other users—and to propose entirely new questions, which were than rated by each of the other participants.  The software uses a proprietary algorithm to aggregate votes into a rank.  We selected the top 20 questions, which we grouped into themes.    Results: Thirty-one contributors interacted with the software, including seven parents of children with epilepsy, six PhD researchers (including 2 who are also parents), eighteen pediatric epilepsy clinician researchers, and two general pediatrics clinician researchers.  Together, these 31 individuals generated 36 questions, which were prioritized with 1200 total votes. We grouped the top 20 questions into the following six categories: service quality (three questions: ranked 1, 3, 4), comparative effectiveness (four: 2, 9, 16, 20), sleep (two: 5, 7), epidemiology (three: 11, 18, 19), health services research (four: 8, 10, 14, 15), and other (four: 6, 12, 13, 17)--see Table 1.  The highest ranked question was: "Does adherence to the quality measures for epilepsy improve outcomes, including seizure burden, quality of life, and ED use?" Conclusions: A multi-stakeholder group placed high emphasis on research questions related to quality measurement in pediatric epilepsy.  Comparative effectiveness, sleep, epidemiology, and health services research were also high priorities.  Follow up is needed to understand if this prioritization process successfully influences researchers’ selection of questions for study, and ultimately leads to research funding. Funding: PCORI