Table 3

Challenges and solutions from a European Lung Foundation perspective

Project areaSpecific challengeSolutions implementedFuture recommendations
Engagement with and management of expectations, project chairs and membersELF to maintain an overview of multiple project actions and deadlines to ensure patient input co-ordinated effectively and with feasible deadlines.Open and regular communication between EMBARC, ELF and patient representatives.
Shared commitment and enthusiasm by all to ensure positive engagement of, and experience for, patients involved in the projects.
ELF inclusion in development of project action plans at earliest stage possible.
Recruitment of a patient advisory groupLarger than usual response to our invitation for patients to get involved in EMBARC projects resulted in >50 members on our bronchiectasis patient advisory group (rather than ∼6–12).Defined the >50 members as a “patient reference panel” for wider consultation at key points during projects. From this panel, we engaged with those individuals who wanted to be more involved in working groups.Potential model for future projects. Benefits of having the wider reference panel:
1)There is a core base of people ready and engaged for consultation at key points;
2)Opportunities for easier recruitment for future projects or if representatives have to drop out due to ill health or other commitments;
3)Wider promotion of project outcomes through the core group.
Communication and consultation with wider patient advisory groupEnsuring two-way communication between patient representatives attending task force meetings and wider patient advisory panel to ensure that wider views are represented.Development of “Conflict of Interest and Confidentiality” form for patient representatives and patient advisory group members to complete prior to involvement in task forces and projects.Provide clearer guidance and mechanisms for patient representatives to easily give feedback and gather views from the wider patient advisory group.
Preparation and training for patient representatives involved in task forcesLack of detailed, written guidance for patient representatives involved in task force meetings.Developed guidance booklet including case study from patient representative involved in this task force.Review guidance and training in light of recommendations raised in this article.
Ongoing support for patient representativesIncreasing demands on core group of patients as workload increases.Ongoing communication with patient representatives and project chairs throughout the project to highlight potential pressure points.Setting realistic role descriptions, expectations and timelines from the beginning and reviewing these throughout the project.
Guidance for task force/project chairsNo defined process.Clarification of our patient input process to aid discussions and planning (supplementary material).
Basic guidance for task force chairs developed.
Involve patient representatives at initial discussion stage to ensure best patient involvement approaches are used.
Review current guidance for task force chairs, to expand and include a checklist of key responsibilities.
Include recommendations for keeping ELF involved and up to date in project development and timeline.
Face-to-face meetings with patient representativesValue of face-to-face meetings recognised but posed some difficulties for individual patients around potential risks; also some technology difficulties encountered.Developed risk protocol document in response to this for use with patients attending face-to-face meetings in future.Ongoing use and review of risk protocol.
Evaluation of patient involvement in projectsLack of embedded evaluation processes.Added a question to task force annual review reports about their experience of patient involvement to date, to help capture feedback part-way through the project so can tackle any issues raised.
Piloted an evaluation survey for patient advisory group members at end of project (aim to widen this out to other projects).
Reflection and production of the content for this article.
Develop ELF evaluation strategy to identify best ways of capturing experiences of patient involvement, in order to promote high-quality engagement in the future.
Suggest involvement of patients and healthcare professionals in evaluation stages.
Ongoing informal and open communication with patient representatives to encourage the raising of any issues/problems that can be addressed.
Ending a projectHow to acknowledge patient participation at the end of projects.Not yet applicable.Define process for exit strategy for patient representatives when projects end.
Current exploration of maintaining patient advisory groups over longer term.