Hispanic Asthma Network Project

Nuestra Salud serves the health needs of the Hispanic population of New Mexico.  Lung health, particularly asthma care in children, is an important issue in our community. Family advocates recently worked on a funding proposal for the Patient Centered Outcomes Research Institute (PCORI) with researchers from the University of New Mexico.  The proposal process made us realize that truly working as partners with professional researchers, and allowing them to access our resources, was not easy.   As an advocate organization, we need training and support to build our capacity to participate more fully in developing comparative effectiveness research (CER) questions, participate in the design and evaluation of the research findings, and to assure our efforts are valued. During this work we found that academic researchers may want to work with us, but negotiations on compensation, the role of the patient voice in shaping research goals and objectives, and who would be “in charge” were difficult. We were recently awarded a PCORI Tier I Pipeline grant which has helped us to facilitate our partnership in a more meaningful way. The goals of this nine-month project are to engage a network of Hispanic families with children with asthma, researchers, and stakeholders to develop relationships based on trust and a mutual interest in improving the health of Hispanic children with asthma while developing a proposal for PCORI.  During this presentation we will share how our partnership has progressed, the challenges we have faced and how we have handled often discordant perspectives and priorities.