Patient-Engaged Research
What is Patient-Engaged Research?
Patient-engaged research is an approach to research where patients and care partners are members of the research team.
Patients and care partners share their expertise about living with pulmonary fibrosis (PF) and work alongside scientists and researchers to plan, design, and conduct the research study.
Patients and care partners may impact the research study by contributing from beginning to end.
Patients and caregivers have a seat at the table with researchers and their input helps shape the study.
What are the Benefits of Patient-Engaged Research?
With patients’ and care partners’ input and expertise, research is more likely to be meaningful to patients and help improve quality of life for the next generation of patients.
There is increased likelihood that the research will be conducted in a way that is patient-centered, that is in a way that puts patient needs first.
There is greater emphasis on making the results of the research study accessible and understandable to other patients and care partners.
Patients and care partners may feel empowered to make a difference to help future generations of people living with PF.
Want to Get Involved?
Do you want to work with researchers and scientists to make PF research more meaningful? Let us know of your interest.
Do you have ideas for specific research studies or ideas about what PF research should be conducted to benefit patients and care partners? Tell us about it here.
“Patient-engaged research is very important because it gives patients and caregivers a voice to express their real-life experiences to researchers.”
— PF patient and board member