Abstract
Background: The Irish Lung Fibrosis Association (ILFA) developed a National Patient Charter for Idiopathic Pulmonary Fibrosis in 2015.
Aim: To engage with multiple stakeholders to progress the goals of charter, develop work priorities and guide future ILFA projects.
Methods: 30 patients, carers, healthcare staff, and industry representatives were invited to a half-day forum. An independent facilitator led a modified ‘World Café’ protocol. Participants worked in groups to share ideas to progress the charter's goals which call for access to;(1) early diagnosis (2) clear information (3) medication and oxygen (4) exercise and pulmonary rehabilitation (5) lung transplantation (6) additional support. All ideas were captured via post-it notes by nominated note-takers. Data were sorted, a list of proposals circulated electronically, and respondents asked to prioritise actions.
Results: 9 patients, 5 carers, 3 healthcare professionals, 3 industry representatives and 8 ILFA committee members took part and generated 89 proposals. 19 participants and 4 non-attendees chose 3 priority activities for each of the 6 charter principles. ILFA has committed to progress actions, where feasible, and has delivered on proposals relating to raising awareness, lobbying, palliative care, and oxygen concerns in the 6-months since the brainstorming session.
Conclusion: The ‘World Café’ framework was an innovative, flexible, dynamic and opportune way to actively engage with multiple stakeholders. The collaborative process positively influenced the work plan of a patient organisation and ensured that activities are matched with the priorities of patients, healthcare professionals and industry.
- Copyright ©the authors 2017
