Lessons learned from patients and clinicians working together to develop clinical guidelines in Europe

Findings from an article published in Breathe journal recently about the involvement of patients in an ERS working group to develop the first European clinical guidelines in managing adult bronchiectasis

Developing clinical guidelines at the European level

Involving patients in the development of European clinical guidelines through the work of the European Respiratory Society (ERS) is a growing area and a recently published article in Breathe journal highlighted the shared learning from involving patients in the project.

The article included perspectives from the patients and healthcare professionals involved, as well as European Lung Foundation (ELF). Some of the key findings are summarised below. The patients involved completed EPAP before they started.

EMBARC/ELF bronchiectasis patient advisory group

EMBARC, a European bronchiectasis clinical research collaboration, was set up in 2012 and funded initially by ERS, and is dedicated to improving research and care for people with bronchiectasis. It endeavours to be patient-focused in all its activities and projects.

ELF formed an advisory group made up of patients and carers with lived experience of bronchiectasis, to engage in the activities of EMBARC. An advisory group of 8 people was formed with another 40 individuals providing an email-based reference group.

One of EMBARC’s first projects was to develop the first European clinical guidelines for bronchiectasis, and a working group was formed of medical experts based across Europe and three members of the patient advisory group, from Spain, Germany and UK. The guidelines were launched at the ERS International Congress in September 2017 in Milan.

What patients said about their involvement in the project

Patient representatives Marta and Thomas The three individuals chose to get involved for a range of reasons which included their own personal
experiences of care and for a desire to improve treatment for themselves and others. They all acknowledged that the decision to get involved was a major undertaking and their experiences gave rise to recommendations for involving patients in the future:

Explain clearly what is expected from patients getting involved in the project, e.g. role, time commitment, training provided.
Ensure the patients are involved at an early stage when they have the opportunity to actively influence the research from the very beginning.
Ensure that meetings are structured to reflect the presence of patients and that patients are fully prepared to attend these formal meetings – in particular the first meeting which can be particularly challenging.
Greater awareness is needed about the potential impact of patients being exposed to medical data/information throughout a project that might have a personal bearing on them, e.g. prognostic signs of a particular treatment/element of the condition. Patients should be forewarned about such information possibly being discussed.
A single point of contact to discuss issues as they arise and from whom patients can obtain information is helpful throughout the project. This could be a member of the working group panel or a member of an organisation such as ELF.
All publications arising from the EMBARC project should be made freely available to patients.

What clinicians said about their experience of patient involvement in the project

There was some initial resistance to patient involvement from some individuals, because of concerns that patients might be upset by some aspects of discussion or that the presence of patients might stifle debate.
Other barriers identified included the need for in-depth scientific discussion which may not always be accessible for the patient (and may be interrupted by the need for explanation).
Clinician attitudes towards patient involvement clearly changed over the course of the project and clinicians commented how overwhelmingly positive the experience has been. The genuine level of enthusiasm is reflected in increasing requests to involve patients in further events, committees and activities.

What ELF said about their experience of facilitating patient involvement in the project

The feedback from patients and clinicians gave ELF an opportunity to ensure smoother participation and involvement for patients in the future.
Key challenges faced by ELF included:

- Managing expectations of project chairs and members of the working group

- Ongoing communication and consultation between all parties

- Preparation and training for patient representatives

- Evaluation

ELF was able to develop guidance for working group chairs for future projects and also refined their patient input process in light of feedback.