West Nile Virus Advocacy is a small but active group of West Nile Virus (WNV) patients and their caregivers. Our members share experiences, provide emotional support, and collaborate with one another online through social media as well as in person through monthly support group meetings.
WNV is a rare disease that can result in death or leave the patient with severe medical issues that significantly reduce quality of life. Patients are concerned as to the availability of information concerning chronic symptoms they experience from contracting WNV. This lack of knowledge as well as awareness impede productive dialogue with the patients’ healthcare providers. The rarity of contracting WNV, the high potential for misdiagnosis and the fluctuation of WNV outbreaks all contribute to the lack of emphasis placed on WNV research, especially as it concerns the resulting quality of life.
PCORI Tier I funding will allow us to nationally seek and develop relationships with interested researchers and other stakeholders, as well as expand and provide a formal infrastructure to our patient and caregiver community. Once these relationships are established, we will build and engage these collaborations through a patient advocacy group (PAG) and executive committee. The PAG will gather information on desired patient-centered outcomes and utilize the information to develop comparative effectiveness research ideas regarding the quality of life for WNV patients. We are extremely excited and hopeful for the results we anticipate will help WNV patients through this Pipeline to Proposal award.
^Jennifer Holmes, BS, from Alive With West Nile, was the original project lead for this project.