Article type
Abstract
Background: There are handbooks about how to involve patients in Clinical Practice Guidelines (CPGs) but not specifically in the cases of rare diseases (RDs). Given the scarcity of information and expertise, active patient engagement becomes crucial. Such involvement facilitates/aids that guideline’s developers as they address patient priorities, improve outcomes, and foster collaboration among stakeholders in RD management.
Objective: Our aim was to undertake a review to produce a guide for involving patients with RD in all stages of CPGs development and ensuring that their needs, views, and expectations are incorporated.
Methods: A literature search was conducted in Medline (Ovid), Embase (Elsevier), and the Cochrane library as well as in EURORDIS, NORD, and INAHTA. GIN resources such as the GIN Public Toolkit were also used. Eligible articles/documents were those that applied methods for involving patients in CPGs, other clinical decision support tools, and in research studies. A purpose-designed data extraction sheet was completed with the following data: author/year and country, type of literature, characteristics of the target population, and strategies for participation/engagement and involvement. Data were synthesized according to methods for (i) recruiting patients, (ii) involving and/or engaging them, and (iii)obtaining information from them. The whole process was peer reviews. The document was revised by five reviewers, four of whom were patient representatives.
Results: A total of 1368 records were identified, 1113 after removing duplicates . Out of these, 60 were finally included. The review showed/identified/highlighted various patient categories (patient representatives , patient experts, and individual patients) and their recruitment methods, categorized as open or nominated. It identified diverse involvement strategies, such as consultation/participation/communication and emphasizing distinctions between involvement/engagement in CPGs development. Furthermore, it identified procedures for gathering patient views, including surveys, workshops, and focus groups. The review showed methods that emphasize the importance of patient involvement in dissemination/implementation.
Conclusions: Our guide describes available methods to identify needs and expectations of patients with RDs in the CPGs. The active involvement of patients with RDs throughout the development of CPGs enables them to highlight crucial RD-related topics/outcomes . Patients with RDs play a vital role in addressing management gaps and enhancing guideline relevance.
Source funding the research: European Reference Network: ERN-Guidelines programme. Tender Nº SANTE/2018/B3/030.
Objective: Our aim was to undertake a review to produce a guide for involving patients with RD in all stages of CPGs development and ensuring that their needs, views, and expectations are incorporated.
Methods: A literature search was conducted in Medline (Ovid), Embase (Elsevier), and the Cochrane library as well as in EURORDIS, NORD, and INAHTA. GIN resources such as the GIN Public Toolkit were also used. Eligible articles/documents were those that applied methods for involving patients in CPGs, other clinical decision support tools, and in research studies. A purpose-designed data extraction sheet was completed with the following data: author/year and country, type of literature, characteristics of the target population, and strategies for participation/engagement and involvement. Data were synthesized according to methods for (i) recruiting patients, (ii) involving and/or engaging them, and (iii)obtaining information from them. The whole process was peer reviews. The document was revised by five reviewers, four of whom were patient representatives.
Results: A total of 1368 records were identified, 1113 after removing duplicates . Out of these, 60 were finally included. The review showed/identified/highlighted various patient categories (patient representatives , patient experts, and individual patients) and their recruitment methods, categorized as open or nominated. It identified diverse involvement strategies, such as consultation/participation/communication and emphasizing distinctions between involvement/engagement in CPGs development. Furthermore, it identified procedures for gathering patient views, including surveys, workshops, and focus groups. The review showed methods that emphasize the importance of patient involvement in dissemination/implementation.
Conclusions: Our guide describes available methods to identify needs and expectations of patients with RDs in the CPGs. The active involvement of patients with RDs throughout the development of CPGs enables them to highlight crucial RD-related topics/outcomes . Patients with RDs play a vital role in addressing management gaps and enhancing guideline relevance.
Source funding the research: European Reference Network: ERN-Guidelines programme. Tender Nº SANTE/2018/B3/030.