There is scientific consensus that the Zika virus causes microcephaly in newborns, and recent case reports also suggest a link between Zika and other neurological disorders such as myelitis or brain abnormalities. The Zika virus is spread primarily through the bite of an infected mosquito of the Aedes species and sexual intercourse, both of which entail significant action on behalf of the patient to prevent the disease, therefore presenting a significant opportunity for patient-centered outcomes research (PCOR) and comparative effectiveness research (CER) to have an impact. Local transmission has been reported in various countries and US territories, including Puerto Rico.
Developing a blueprint for future research in maternal/child health as it relates to Zika disease is essential for addressing health disparities in affected areas. The purpose of this project is to convene patients, stakeholders, and researchers to discuss opportunities and generate recommendations to establish research that emphasizes patient engagement and helps communities make informed decisions to improve public health, healthcare delivery, and health outcomes related to Zika. The envisioned project entails a blueprint conference to disseminate evidence-based practices and educate participants on research design and methodology related to patient-centered outcomes research, clinical comparative effectiveness research, and community engagement. Clusters of stakeholders will be grouped into “research communities” around specific core areas affected. The conference will culminate in a Zika-related PCOR/CER research agenda to be discussed and implemented by these “research communities” and presented and refined at a symposium within six months. A colloquium will be held within six months to disseminate the results of the work done and share research results.
The blueprint conference and related activities seek to bridge the gap between research and practice by bringing together research scientists, patients, prevention experts, program designers, policy makers, community leaders, advocates, practitioners, and funders to share ideas and learn about evidence-based programs to prevent maternal/child health problems related to Zika. In addition to presenting information on evidence-based programs, the conference will present patient-centered outcomes research as an effective alternative for carrying out research in this field. In addition to warranting participation in these activities, the proposed project aims to engage the formed research communities in future PCOR/CER projects focused on Zika.