Learn about patient involvement in activities such as developing guidelines and research projects.
The following steps are used by ELF when involving patients in activities such as guidelines and research projects. We hope that this outline and the associated documents and links can be a useful resource for individuals wanting to involve patients in their activities or for patients who want to get involved themselves.
Patient involvement should be considered during the application process and can include one or more of the steps below.
Carry out a patient-centred literature review: A patient literature review can identify published literature about how patients experience a condition or issue, their perception of unmet needs and possible improvements. Key messages and gaps can be identified, together with an indication of how to collect further views. Where a guideline development group (Task Force) is using an information specialist/librarian to conduct the searches for their systematic review, then we recommend that they also undertake the searches for a patient-centred literature review using databases such as CINAHL, PsychINFO and Embase. The ELF team can support a qualitative literature review if required and can also undertake grey literature and social media discussion searches as appropriate.
Formation or use of a Patient Advisory Group (PAG): ELF has Patient Advisory Groups made up of individuals (patients, carers and patient representatives) in different disease areas. These groups can be consulted throughout the course of a project. If a PAG does not exist, then one can be formed to input into a project. Where the issue is cross-cutting, the ELF United PAG can be consulted. 2-3 patients from a PAG should be selected to input into the project on behalf of the group (i.e. on a Task Force committee).
Training provided through EPAP: Any patients and carers getting involved in a project will be asked to complete the ELF European Patient Ambassador Programme (EPAP) so that they have a basic understanding of issues such as guideline production and research.
For patients
For professionals
Online survey: Multilingual online surveys are a great way to gather the perspectives of a much wider number of patients and carers across Europe to input into any project.
Discussion groups: Where surveys are not appropriate, patients can be brought together to discuss topics defined by the project. Discussion groups can be held in different countries or as one group of patients from a range of countries. ELF PAGs may also be used for this purpose.
Interviews: Interviews may be an option to gather more information from individuals about a topic. This may be useful for a very rare disease or disease at an advanced stage when it may be difficult to find many individuals to input.
PICO questions: Patient representatives can help to inform the questions and identify outcomes that the evidence is graded against, e.g. quality of life measures.
GRADE process: Patient representatives can help to define the values and preferences of patients, and in particular, contribute considerations around the risks, benefits and challenges of proposed interventions.
Ongoing consultation: When involved in a project, the PAG will be available to consult on issues arising from literature searches, project discussions and patient perspectives on topics covered in publications.
Final manuscript: Patient perspectives should be included in the final manuscript (as a specific section or alongside each of the recommendations). Patient input should also be outlined in the methodology and contributors to be mentioned as authors or in the acknowledgements.
Separate paper: Patient perspectives can also be presented in greater depth in a separate paper that ELF can help to produce, cross-referencing between the final manuscript and the patient paper where possible.
Documents and links
Links to published manuscripts with different patient input options as described above e.g.
Final manuscript:
Separate paper:
Review of the recommendations: The PAG can check and validate the recommendations of the project from the patient perspective.
Review of the final manuscript: The PAG can check the final manuscript from a patient perspective and assess which sections should be disseminated to patients.
Lay version: ELF and the PAG can help develop a plain language version of any publications from a project (in several languages).
ELF network: ELF can communicate any project outcomes via its network, newsletter, website news and social media channels.
Breathe patient-professional perspective: Breathe is a free-to-access journal produced by the ERS. ELF can help produce an article on the project topic with a reference to the final publication.
Documents and links:
