Background: Patient versions of guidelines are easier for laypeople to understand and accept when compared with the professional ones, and have becomes increasingly important for healthcare services as well as shared decision making.
Objectives:To examine who participated in developing the patient version of guidelines.
Methods: We searched PubMed and Google with 'patient guide', 'patient version of guideline' and 'patient guideline' for relevant documents, and identified organisations that released patient guidelines. Then we browsed the official wedsites of them to retrieve patient guidelines. All the included guidelines were read by two independent researchers to abstract the information about the development group/individuals.
Results: We identified 244 patient guidelines. Most of them were released by professional organisations, among which the top five were TES/ THF (59, 24%), RCOG (47,19%), ACP (39, 16%), NCCN (38, 16%), BCMA (25, 10%), and ESMO (20, 13%). We found patient guidelines from the same organisation tended to employ the similar group: TES/THF reported two editors; RCOG’s patient guideline was developed by Patient Information Committee; ACP reported a group consist of one health writer, producer, project manager and cover and guidebook designer; NCCN had one director and two medical writers; ESMO reported the guideline was written by a medical doctor, reviewed by two clinical experts, including the lead author of the professional version, and reviewed by patients’ representatives; SIGN declared a group composed of healthcare professionals, NHS staff, patients, carers and members of the public; whereas others, including BCMA, AGA and ACS, gave no relevant information.
Conclusions: Who should be involved in developing patient guideline was not clearly stated in most of the guidelines. According to experience of these organisations, we suggest developers should consider both medical experts and patients’ representatives to ensure the reliability and acceptability, and include writers to achieve the readability.