Böbel Simone, Gerhardus Ansgar, Herbon Carolin, Jilani Hannah, Rathjen Kim Isabel, Schmiemann Guido, Schilling Imke
Department for Health Services Research, Institute of Public Health and Nursing Research, University of Bremen, Grazer Straße 4, 28359, Bremen, Germany.
Health Sciences Bremen, University of Bremen, 28359, Bremen, Germany.
Res Involv Engagem. 2024 Oct 28;10(1):111. doi: 10.1186/s40900-024-00648-1.
Patient and Public Involvement (PPI) is increasingly recognized as an essential aspect of clinical research, particularly for ensuring relevancy and impact of research to those most affected. This study addresses the gap in involving older patients, particularly nursing home residents, in the research process by exploring motivations, expectations, and experiences of nursing home residents in Bremen, Germany, involved in PPI for developing a clinical trial on polypharmacy.
Two Patient Advisory Boards (PABs) were established in nursing homes as part of the INVOLVE-Clin project. A Patient Advocate (PA) facilitated communication between nursing home residents and researchers. A qualitative case study approach was employed, involving semi-structured interviews and group discussions with nursing home residents and researchers. Data was analyzed using structured qualitative content analysis.
The study found varied motivations and expectations between nursing home residents and researchers. Nursing home residents valued the social interaction and the opportunity to voice their health concerns, while researchers aimed to incorporate patients' perspectives into study design. The PA was considered crucial in facilitating communication between nursing home residents and researchers. Challenges included the complexity of the study topic and the need for methodological adjustments to suit nursing home residents´ cognitive abilities. Generally, PAB participation was experienced to provide mental stimulation and increased confidence among nursing home residents in discussing their medication management. The PAB's influence led to the decision not to conduct a polypharmacy study.
The findings underscore the importance of flexible approaches to PPI, particularly when involving older nursing home residents. Methodological adjustments, such as tailoring content and structure of PABs, and the inclusion of additional boards for diverse perspectives, are vital for effective involvement. The study also highlights the need for ongoing innovation in PPI methods to ensure meaningful engagement of older patients in clinical research.
This study contributes essential insights into the practical implementation of PPI with nursing home residents, highlighting the need for patient-centric approaches that recognize their unique challenges and contributions. These findings are critical for shaping scientifically robust but also socially relevant and impactful research, especially in an aging society.
患者及公众参与（PPI）日益被视为临床研究的一个重要方面，特别是对于确保研究与受影响最大的人群的相关性和影响力而言。本研究通过探索德国不来梅养老院居民参与多药治疗临床试验的PPI的动机、期望和经历，填补了在研究过程中让老年患者（尤其是养老院居民）参与方面的空白。
作为INVOLVE-Clin项目的一部分，在养老院设立了两个患者咨询委员会（PAB）。一名患者倡导者（PA）促进了养老院居民与研究人员之间的沟通。采用了定性案例研究方法，包括与养老院居民和研究人员进行半结构化访谈和小组讨论。使用结构化定性内容分析法对数据进行分析。
研究发现养老院居民和研究人员之间的动机和期望各不相同。养老院居民重视社交互动以及表达其健康问题的机会，而研究人员旨在将患者的观点纳入研究设计。PA被认为在促进养老院居民与研究人员之间的沟通方面至关重要。挑战包括研究主题的复杂性以及需要进行方法调整以适应养老院居民的认知能力。总体而言，PAB的参与被认为能提供精神刺激，并增强养老院居民在讨论其药物管理时的信心。PAB的影响导致决定不开展多药治疗研究。
研究结果强调了灵活的PPI方法的重要性，特别是在涉及老年养老院居民时。方法调整，如调整PAB的内容和结构，以及纳入更多不同视角的委员会，对于有效参与至关重要。该研究还强调了在PPI方法中持续创新的必要性，以确保老年患者有意义地参与临床研究。
本研究为养老院居民PPI的实际实施提供了重要见解，强调了以患者为中心的方法的必要性，这种方法认识到他们独特的挑战和贡献。这些发现对于塑造科学稳健且具有社会相关性和影响力的研究至关重要，尤其是在老龄化社会中。
