Research News

Research content by Dr. Sarah Tecklenborg, Senior Research & Policy Coordinator, CFI

Public and Patient Involvement (PPI) in Research

Your Voice Matters

Cystic Fibrosis Ireland invites people with cystic fibrosis to have an active say in the research and initiatives which impact them.

CFI will be recruiting a panel of PPI contributors to support the work of the research team and research groups around Ireland. The panel is open to people living with CF aged 12 and over and the family members of people with cystic fibrosis.

PPI contributors will be reimbursed for their time where possible.

What is PPI?

Public and Patient Involvement (PPI) in CF research is research which is carried out ‘with’ or ‘by’ members of the CF community rather than ‘to’, ‘about’ or ‘for’ them.

PPI activities recognise that the lived-experiences of people with CF and their families can contribute additional, valuable expertise and bring novel insights to research.

The inclusion of people living with CF in the design of research allows researchers the opportunity to gain different perspectives and identify questions which matter the most to the CF community. This improves the quality and relevance of the work ensuring it will have the greatest impact on those living with the disease.

What might PPI contributors be asked to do?

PPI contributors are not participants in a research study, they are actively involved in the decisions made about the research. PPI contributors are valuable members of the research team bringing a wealth of expertise from their lived-experience of Cystic Fibrosis.

PPI contributors can be involved in the planning, design, implementation, management, evaluation and dissemination of research projects and may be asked to:

• Help inform research priorities or identify research questions of interest to the CF community

• Help to clarify the research question

• Co-design the project or comment on the suitability of chosen research methods

• Develop research material such as leaflets, information sheets, survey tools and questionnaires, ensuring the language used is easy to understand and that all the necessary information is provided

• Assist with the recruitment strategies for a project

• Assist in collecting data or carrying out interviews or focus groups

• Represent the CF community on project steering groups

• Assist the research team to interpret data and identify themes

• Help to write up dissemination materials to share the research findings back to the CF community

• Share their knowledge and views on where and how best to share the findings

There is a growing interest in public and patient involvement in research by both funders and research organisations. Cystic Fibrosis Ireland is committed to ensuring the voice of people living with CF is at the forefront of research we are involved in.

How can I get involved?

If you are interested in becoming a member of the panel or would like further information please contact Sarah on stecklenborg@cfireland.ie or call 01 4962433.