Mikdashi Jamal
Division of Rheumatology and Clinical Immunology, University of Maryland School of Medicine, 10 South Pine Street, Suite 834, Baltimore, MD 21201, USA.
Rheum Dis Clin North Am. 2022 Aug;48(3):691-703. doi: 10.1016/j.rdc.2022.05.002. Epub 2022 Jul 5.
Patient participation is an integral component in the development of clinical practice guidelines. However, patient engagement remains suboptimal, which signifies a predicament in guideline's legitimacy and transparency. Limited budgets, logistic constraints, and discordance in patients' and researchers' perception of a meaningful involvement are some barriers that hinder patient engagement. Advancing skill development across various roles within the guideline's process will enrich patient's contribution and allow them to voice their experience, knowledge, perspective, and concerns. Continuing patient education and evaluation of their engagement on both outcome and process will facilitate team cohesion, trustworthiness, and value to achieve optimal quality of care.
患者参与是临床实践指南制定过程中不可或缺的组成部分。然而，患者的参与度仍不尽人意，这意味着指南在合法性和透明度方面存在困境。预算有限、后勤限制以及患者与研究人员对有意义参与的认知不一致等，都是阻碍患者参与的一些障碍。在指南制定过程中提升不同角色的技能发展，将丰富患者的贡献，使他们能够表达自己的经验、知识、观点和关切。持续开展患者教育，并对其在结果和过程方面的参与情况进行评估，将促进团队凝聚力、可信度和价值，以实现最佳的医疗质量。
