Romme Sjim, Hermans Max, Bosveld Matthijs Hugo, Plak Angela, Sehlbach Carolin, van Bokhoven Marloes Amantia
Department of Family Medicine at Maastricht University, Universiteit Maastricht Care and Public Health Research Institute, Maastricht, Limburg, The Netherlands
Department of Educational Development and Research, Faculty of Health, Medicine and Life Sciences, Maastricht University School of Health Professions Education, Maastricht, Limburg, The Netherlands.
BMJ Open. 2024 Dec 20;14(12):e079712. doi: 10.1136/bmjopen-2023-079712.
Patient and public involvement is regarded as vital in fostering high-quality care. While involvement has clear societal advantages, it is still widely viewed as tokenistic and surrounded by issues of representation. This study aims to understand how patients and informal caregivers can be trained to effectively contribute to improved quality of healthcare services.
Using an action research approach, a 15-week training programme for patients and informal caregivers called the Patient As a Person Academy was developed, tested and evaluated in three development cycles. Evaluation methods varied per development cycle and included open-ended questionnaires (N=27) and semistructured interviews (N=35) as well as agile evaluation sessions of all 15 training sessions.
We purposively sampled patients and informal caregivers who had prior experience in patient and public involvement. Patients and informal caregivers who participated as patient and partner educators in health professions education in the Netherlands could participate.
Participants followed the Patient As a Person Academy, a 15-week training programme that aims to prepare patients and informal caregivers to become patient partners.
Participants reported that the Patient As a Person Academy's focus on self-management skills, understanding healthcare professionals' perspectives and communication skills helped them to engage in meaningful dialogue with healthcare professionals as patient partners and made them more confident in their roles. However, tailoring towards individual participants' levels of acceptance of illness and reflexivity was needed. Participants reported that, next to the training programme, peer-to-peer coaching and guidance towards roles in quality improvement initiatives would be necessary to optimise their contributions.
Initiatives like the Patient As a Person Academy may alleviate the problems of tokenism in patient and public involvement. However, extensively preparing patients and informal caregivers raises issues around representation.
患者和公众参与被视为促进高质量医疗护理的关键因素。尽管这种参与具有明显的社会优势，但仍被广泛视为形式主义，且存在代表性问题。本研究旨在了解如何培训患者和非正式照护者，使其能够有效地为改善医疗服务质量做出贡献。
采用行动研究方法，为患者和非正式照护者开发了一个为期15周的培训项目，称为“患者即个体学院”，并在三个开发周期中进行了测试和评估。每个开发周期的评估方法各不相同，包括开放式问卷（N = 27）和半结构化访谈（N = 35），以及对所有15次培训课程的敏捷评估会议。
我们有目的地抽取了有患者和公众参与经验的患者和非正式照护者。在荷兰参与卫生专业教育、担任患者和伙伴教育者的患者和非正式照护者可以参加。
参与者参加了“患者即个体学院”，这是一个为期15周的培训项目，旨在使患者和非正式照护者做好成为患者伙伴的准备。
参与者报告称，“患者即个体学院”对自我管理技能、理解医疗专业人员的观点以及沟通技能的关注，帮助他们作为患者伙伴与医疗专业人员进行有意义的对话，并使他们对自己的角色更有信心。然而，需要根据个体参与者对疾病的接受程度和反思能力进行调整。参与者报告称，除了培训项目之外，还需要同伴辅导以及在质量改进倡议中担任角色的指导，以优化他们的贡献。
像“患者即个体学院”这样的举措可能会缓解患者和公众参与中的形式主义问题。然而，让患者和非正式照护者做好充分准备会引发代表性方面的问题。
