Background: Psoriasis is an incurable, chronic, systemic inflammatory disease that most commonly manifests in the skin as red scaly patches and is associated with many comorbidities including joint and heart disease. Many effective treatments for the treatment of psoriatic disease have been developed, but many research gaps and challenges remain. A stronger relationship between patients and psoriatic disease researchers must be established to make the greatest strides in the shortest amount of time to improve patient lives.
Solution: The National Psoriasis Foundation’s Psoriatic Disease Research Ambassadors (PDRA) program satisfies an unmet need for a nationwide group of specifically trained psoriatic disease patients capable of contributing to the patient-centered outcomes research (PCOR) process and ultimately facilitating high-impact comparative effectiveness research (CER). Ambassadors will be positioned in 12 markets across the United States.
Objectives: The overall objective of the PDRA program is to establish long-term infrastructure for psoriatic disease PCOR and CER through education, patient-researcher engagement, and dissemination of information. To achieve this objective, National Psoriasis Foundation (NPF) will:
- Execute a recruitment and training program that gives Ambassadors the skills and knowledge necessary to contribute effectively to PCOR and CER.
- Establish an infrastructure for ongoing support of, and engagement with, Ambassadors.
- Implement a plan for long-term sustainability of the PDRA program.
Activities: Research Ambassadors in 12 markets across the United States will conduct site visits with researchers in their region, disseminate local research activities through social media and other channels, and engage and mobilize patients in their community around psoriatic disease research. Ambassadors will be community-level representatives of PCOR with a national connection through NPF. A PDRA website will provide an online hub for geographically isolated Ambassadors and provide resources for purposes of education, engagement, and dissemination. Ambassadors will remain engaged with each other and with NPF through regular reporting and a biennial in-person meeting.
- An increase in the number of psoriatic disease patients educated in research and engaged in PCOR and CER.
- Decrease in the number of psoriatic disease patients who report a lack of data and/or a lack of scientific understanding as an obstacle in their disease management.
- Increase in researcher awareness of patient priorities, an increase in the frequency of researcher engagement with patients.
- Elevated patient influence on the nature of psoriatic disease research projects being conducted from start to finish.
- Increase in the number of active psoriatic-disease-specific CER studies.
Patient Engagement: Patients will be engaged through geo-targeted emails, print, in-person events, online, and through healthcare providers.
NPF Blog: Running Strong in the Name of Science (2/22/18)
Andrew Johnston, M.D., Ph.D., a research assistant professor in the Department of Dermatology at the University of Michigan in Ann Arbor, and Marco Bianchini, a mechanical engineer living in Rochester, Michigan, and an NPF Research Ambassador, team up to fight psoriasis and run a half marathon.