|[October 6, 2017] – The Child Neurology Foundation (CNF) has been approved for a $50,000 funding award by the Patient-Centered Outcomes Research Institute (PCORI) to support a project on peer support for families living with pediatric neurologic conditions.
CNF will use the funds provided through PCORI’s Pipeline to Proposal Awards program to build a partnership of individuals and groups who share a desire to advance patient-centered outcomes research.
Pipeline to Proposal Awards enable individuals and groups that are not typically involved in clinical research to develop the means to develop community-led funding proposals focused on patient-centered comparative effectiveness research (CER). Established by the non-profit PCORI, the program funds help individuals or groups build community partnerships, develop research capacity, and hone a comparative effectiveness research question that could become the basis of a research funding proposal to submit to PCORI or other health research funders.
For over a decade, CNF has fielded both informational and emotional support requests from families living with neurologic conditions. These families represent those living with chronic and complex conditions who are navigating the healthcare system. In 2015, CNF began to utilize parents as coaches to respond to these peer requests. In 2016, a partnership with the HALI Project allowed for expansion of this peer support program and its redefinition as the Family Support and Empowerment Program (FSEP).
From February 2017 to the present, FSEP has served families from 41 states and 33 countries. CNF has collected data espousing the benefits of peer support; however, CER regarding the various formats of peer support (e.g., virtual versus face-to-face models) to this targeted population is lacking. With this award, CNF will gain a better understanding of the utility of virtual peer support (via the use of appropriate technology) for families living with pediatric chronic conditions versus families receiving face-to-face peer support. See addition details about CNF’s project here.