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 U.S. territories, including Puerto Rico.
At Impactivo, we are committed to the health and well-being of women and children. Because of this, Impactivo obtained a PCORI EAIN Award to aid in the development of fostering future research in maternal/child health as it relates to Zika disease, which is essential for addressing health disparities in affected areas.
Purpose
The Blueprint for the Future Conference convened in March 2017. The event brought together researchers, academics, patients, healthcare professionals, and community groups with the purpose of disseminating evidence-based practices and educating participants on research design and methodology related to patient-centered outcomes research, clinical comparative effectiveness research, and community engagement. Clusters of stakeholders were grouped into “research communities” around specific core areas affected. The conference culminated in a Zika-related PCOR/CER research agenda that was shared with all participants and stakeholders.
You may access the research agenda and conference proceedings in the links below.
Held in January 2018, the Symposium: Zika & the Spectrum of Disease convened patients, clinical researchers, scientists, and community leaders, among others. The participants shared a dialogue aimed at defining and making viable the use of an agenda for the research on Zika, aimed at mother-child healthcare in Puerto Rich. The Symposium allowed stakeholders to understand the status of research and exchange ideas about priorities of research.
You may access the conference proceedings in the link below.
The Colloquium-Ethical Aspects of Patients’ Involvement in Research: The Case for Establishing a Patient-Centered Research Agenda for Zika and Emerging Health Threats convened in August 2018. The Colloquium sought to inform and promote PCOR as a new way to carry out research. Throughout our two years in the Engagement Award, our focus had been Zika, but the Colloquium tried to refocus on PCOR. The first plenary session, “Why Involve Patients in Research? Why Ask Them What Matters?”, set the tone for the activity by making patients the heart of what drives research. Second, the colloquium sought to disseminate the results of the work done throughout the two years of the project by our team and to share available results while also giving researchers, clinicians, patients and community members the opportunity to interact and share their experience in research efforts.
You may access the conference proceedings in the link below.