Public, Patient and Carer Involvement in Research
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. This year ILFA would like to set up a PPI Research Advisory Group to inform our research activities, enhance collaborations with researchers and support and influence research relating to lung fibrosis. Ideally, we would like to recruit 15 members.
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.
- The group will be asked to meet 2-3 times a year (virtual meetings to start with).
- A commitment to adequate preparation for meetings is required. Members will be asked to read and consider any documents sent in advance of the meeting.
- Members are asked to engage in active, meaningful, and respectful collaboration with other members of the group, ILFA Board Members and research investigators if necessary.
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.
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