Patient-centered research places the patient at the center of the research process. It engages patients and caregivers throughout the research process, from the formulation of research questions to the dissemination of results. Engaging in Patient Centered Research ensures that research addresses questions and outcomes most important to patients and caregivers, produces scientifically valid evidence, and helps patients, caregivers and clinicians make decisions that will improve patient outcomes.
Patient-Centered Research
NPF is a leader in patient-centered research.
When NPF was created by patients in 1967, the founders sought to empower patients in the research process.
Did You Know?
Citizen Pscientist
Citizen Pscientist is a patient-powered research platform. Patients contribute directly to the research process by responding to questions about their experience living with psoriatic disease. It also encourages them to explore the data to answer their own research questions and submit research questions. Citizen Pscientist was developed through support from the Patient Centered Outcome Research Institute (PCORI).
Five patient members of the Citizen Pscientist Governance Committee became trailblazers in psoriatic disease research when they appeared as co-authors of a paper, “Building a Citizen Pscientist: Advancing Patient-Centered Psoriasis Research by Empowering Patients as Contributors and Analysts,” in Dermatology and Therapy in June 2019.
The LITE Study
The LITE Study is a large, pragmatic clinical trial to compare the impact of home versus office-based phototherapy on patients with psoriasis. The study, which began in 2019, involves 1,050 people ages 12 and older with plaque or guttate psoriasis who are candidates for phototherapy.
LITE receives funding from PCORI.
Research Ambassadors
Research Ambassadors are individuals with psoriasis who are knowledgeable about the research process and have received special training to provide outreach to researchers, educators and other stakeholders in the psoriatic disease community. Research Ambassadors provide the patient perspective on living with psoriasis. They inform the development of research topics, study outcomes and approaches to research.
The Research Ambassadors program was developed with funding from PCORI. As of May 2020, NPF is not recruiting for the program.
Surveys
NPF conducts an Annual Survey of people with psoriasis and psoriatic arthritis to collect real-world data on their daily experiences, quality of life, mental health, and ability to participate in social activities. The data collected provide valuable insight into patient outcomes outside of clinical trials or other traditional research approaches. It is the only national survey of patients with psoriatic disease conducted in the U.S.
NPF’s Advocacy Survey focuses on health insurance issues, particularly the effects of step therapy, prior authorization, and barriers to care (e.g., cost of medications).
In addition to the Advocacy Survey, NPF conducts ad hoc surveys of individuals with psoriatic disease to assess the impact of emerging topics.