This project builds on the successful West Nile Virus (WNV) partnership developed in our Tier I project where we established an Executive Committee and a Patient Advisory Group. This network of WNV patients, caregivers, researchers, and stakeholders convened on a regular basis to actively engage in the development of Comparative Effectiveness Research (CER) ideas. A formal governance structure was developed and the partnership was incorporated. This was crucial in establishing credibility as our partnership began as a grass roots effort by two individuals.
In Tier II our partnership will expand to include all mosquito borne illnesses. Additional researchers, Public Health officials, and an American Mosquito Control Association representative will be added. Patient recruitment will expand as we meet with Public Health officials in various states. Patients and caregivers will be actively engaged through meetings, social media, and the partnership’s website. Co-learning will result from meetings where the research and stakeholder partners review CER ideas with patients and caregivers to help refine the ideas. Several of the CER ideas concern patient quality of life and range from prevention to proper diagnosis. The valuable input by patients and caregivers will ensure the patient centeredness of the final chosen CER question.
At the conclusion of Tier II we will have a mature partnership with the skills, expertise, and infrastructure necessary to continue successfully into a Tier III award where we will engage with all partners to develop a high quality research proposal that can be submitted for PCOR funding.
*This project was originally titled Collaboration of West Nile Virus Patients, Their Caregivers, and Researchers - Tier II.
^The original project lead was Tracy N. Perkins, CPA.