The objective of the study published on February 19, 2025 as a Journal pre proof on Patient Edcuation and Counseling (§), is to develop a proposal to involve people living with rare and complex conditions in the development of clinical practice guidelines, based on a systematic review of qualitative literature (64 publications). The authors offer a framework for actively involving people living with rare and complex conditions throughout the clinical practice guidelines development process, aiming to produce more inclusive and practical recommendations that better reflect real-world patient needs. Key points of proposal include need to include diverse patient profiles (patients, expert patients and patient advocates) and to adapt participation process to their preferences (schedule, locations, transportation or virtual platforms).
In the field of pulmonary hypertension great progress has been made with respect to involvement of patients in clinical guidelines development: two patient advocates, Gergely Meszaros JD, MSc and Pisana Ferrari, who is also a patient, were included as co-authors of the joint European Society of Cardiology and European Respiratory Society 2002 guidelines (the most recent to date), setting an important precedent for the future.
Read more at this link on Science Direct.
/§) Patient Education and Counseling (PEC) is the Official journal of EACH, the International Association for Communication in Health Care and ACH, the Academy of Communication in Healthcare.
Citation
Anabel Granja-Dominguez, Carmen Martin-Gomez, Juan Darío Ortigoza-Escobar, Rocío Rodriguez-Lopez, Lourdes Gonzalez-Bermudez, Stefania Dantone, Stefano Pavanello, Juan Antonio Blasco-Amaro, A proposal to involve people living with rare and complex conditions in the development of clinical practice guidelines, Patient Education and Counseling, 2025,108708, ISSN 0738-3991, https://doi.org/10.1016/j.pec.2025.108708, (https://www.sciencedirect.com/science/article/pii/S0738399125000758)