Patient and public involvement (PPI) in research is defined by the National Institute for Health Research as “Research carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them”.
Public, patient, and carer Involvement in research is becoming increasingly important in research planning, development, and design, and is now considered best practice. Actively involving patients and the public in research activities ensures that the voice of patients and other interested parties is included to influence quality research. This results in research activities that are enhanced, better designed, with clearer and more relevant outcomes, and a faster uptake of new evidence.
ILFA is committed to PPI to ensure patients’ and carers’ perspectives and priorities influence our aims/mission, values, activities, advocacy, and research. ILFA set up a PPI Research Advisory Group in 2022 to inform our research activities, enhance collaborations with researchers and support and influence research relating to lung fibrosis. The group meets 2-3 per year and will discuss and evaluate research opportunities, proposals and funding applications .
If you have a research proposal relating to lung fibrosis and would like PPI input, please contact ILFA via email to firstname.lastname@example.org.
Role of the PPI Advisory Group
The role of the PPI advisory group is to contribute their perspectives to ILFA’s research activities, to engage with research proposals. meaningfully and actively collaborate in the governance, priority setting and conduct of research, as well as in summarising, distributing, sharing results and knowledge.
ILFA has prepared Terms of Reference for the PPI Advisory Group that are available on request. If you are interested in joining the PPI Advisory Group, please contact ILFA by the end of June 2022.
Email email@example.com or call 086 871 5264
Research is one of ILFA’s primary aims and the ILFA committee recognises the value of all types of research to advance our understanding of lung fibrosis.
ILFA has a strong research focus and we regularly conduct research surveys with our members. Our research data have been presented our research data at national and international congresses as oral presentations and poster presentations at the Irish Thoracic Society scientific meeting and the European Respiratory Society Congress.
ILFA has collaborated with international healthcare professionals and organisations including the European Respiratory Society Taskforce on Interstitial Lung Disease and the European Lung Foundation.