“Let’s Talk Unmet Needs for Lung Fibrosis Patients”
Patients and carers are invited to ILFA’s online discussion entitled “Let’s Talk Unmet Needs for Lung Fibrosis
Let’s talkPatients” with team members from The BioInnovate Program based in University of Galway. The program takes a ‘Needs Led Innovation’ approach (process) to create novel healthcare solutions to previously unmet and unrecognised problems.
The ILFA Service of Prayer and Reflection will take place on Saturday 15th October at Our Lady of Mount Carmel Whitefriar Street Church, Aungier Steet, Dublin 2 at 4pm. Please let us know if you plan to join us so we can organise numbers for some light refreshments afterwards.
During the service, we will light candles for those patients whose names have been submitted to ILFA by family members. Please email info@ilfa.ie or call 086 871 5264 by 7th October if you would like your loved one remembered.
The service will be live-streamed and available to watch via the church website www.whitefriarstreetchurch.ie, for those who cannot attend the church in person.
If you cannot attend, we encourage ILFA members to come together virtually as a community and light a candle in their home at 8pm on the evening of Saturday 15th October to support or remember loved ones affected by lung fibrosis. You can send your photos to info@ilfa.ie if you would like to share your images.
ILFA is pleased to announce the start of a new ‘Sing Strong for Pulmonary Fibrosis’ class with Ciara Meade, Choir Mistress,
The classes will take place every Wednesday at 12.30pm starting on 21 September for 12 weeks. The online class is free of charge to lung fibrosis patients registered with ILFA. No singing experience or even a good singing voice needed.
All are welcome to this fun, sociable and beneficial class.
Email info@ilfa.ie to register.
Church, Whitefriar St,
Aungier Street, Dublin 2 on Saturday 15th October at 4pm. We are delighted to return to an in-person event and look forward to welcoming our guests. The service may also be live-streamed (to be confirmed).
We hope you will join us in Dublin for this uplifting community event.
“Let’s Talk PPI”
Join Eimear Bell, Respiratory physiotherapist, for an online session entitled “Let’s Talk Breathing Techniques” for pulmonary fibrosis patients.
Eimear will give a presentation on breathing techniques that will be followed by a Questions and Answers session.
Please submit any questions you may have in advance and Eimear will do her best to answer them in the allotted time. The meeting will take place via Zoom and we can provide you with assistance if necessary.
Please email info@ilfa.ie or call 086 871 5264 or 086 057 0310 to register to attend.
ILFA_Newsletter_Summer2022_website
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.
Responsibilities
- 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 info@ilfa.ie or call 086 871 5264
