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.
Email firstname.lastname@example.org or call 086 871 5264
ILFA’s Committment to Research
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.
Recent research activities and achievements
- In 2021, ILFA’s research findings from a survey conducted during the first wave of Covid 19 were published in the Irish Medical Journal. Click the links below to read the articlesPerspectives of Interstitial Lung Disease Healthcare Professionals during Covid19Perspectives of Interstitial Lung Disease Patients and Carers during COVID-19
- ILFA’s World Café on Palliative care and Planning for the Future took place in June 2018. A team of healthcare professionals, patients and carers collaborated to produce a manuscript describing the methodology and findings and this was published in the British Medical Journal Supportive & Palliative Care in October 2021. Click the link below to read the article.
Fibrotic interstitial lung disease – palliative care needs: a World-Café qualitative study
- ILFA became a member of Health Research Charities Ireland in September 2021.
- In 2019, ILFA invited submissions for a share of €30,000 research funding into lung fibrosis in Ireland. Five projects were successful. Funding was to be awarded in stages on commencement of the research project. Unfortunately, the emergence of the Covid19 pandemic impacted significantly on research activities in 2020-2021 and some projects are still to commence. Three of the funded projects involve laboratory-based research with clinical applications, 1 project will focus on remote heath monitoring of lung fibrosis patients using an app and Bluetooth technology and is due to start shortly and funding was awarded to the Irish Thoracic Society’s Idiopathic Pulmonary Fibrosis registry.
- In 2021, ILFA conducted a patient survey to understand the challanges faced by lung fibrosis patients accessing healthcare services and supports in Ireland. ILFA_Member_Service_Needs_Survey 2021
The findings of this survey will be published soon.