Schoemaker Casper G, Schalkers Inge, de Jong Brigit A, Wissink Wilma, le Loux Sacha, Buijsen Ronald A M, Russcher Klaas, van der Steeg Frank A M, Blom Janine, Vroonland Eva
INVOLV, P.O. Box 13040, 3507 LA, Utrecht, The Netherlands.
Wilhelmina Children's Hospital University Medical Center Utrecht, Utrecht, The Netherlands.
Res Involv Engagem. 2024 Oct 25;10(1):110. doi: 10.1186/s40900-024-00646-3.
Patient involvement is most common during the first phases of a research project. Despite good intentions, maintaining meaningful collaborations throughout the research process doesn't seem easy. Several training programmes for researchers and patients have been developed to stimulate continuous involvement. These are mostly one-time training sessions at the start of a project, for researchers and patients separately. We aimed to co-create a prolonged side-by-side programme for pairs of patient representatives and researchers, to stimulate mutual learning from the start and throughout the research projects.
We developed a group training and peer-to-peer support programme lasting 2-3 years for 4-5 pairs of researchers and patient representatives working together on a research project. The programme took 30 h, spread over 6-8 meetings. The main goal was mutual and bi-directional learning and maintaining the collaboration throughout the research projects. From the start, the pairs were instructed to discuss communication, roles, expectations and responsibilities to prevent misunderstandings. The character of the meetings was intended to evolve from training and peer support into peer-group coaching and support for the whole group. The programme was not a fixed method, it was adjusted to the context and the needs of the participants.
Thus far, the programme has been applied in 5 groups, with varying health topics and types of research. Patients' prior knowledge of research methods and researchers' experience with patient involvement varied within the groups. As a result of the side-by-side training power imbalances within pairs were reduced. All participants gained knowledge and experience in patient involvement. In subsequent group coaching sessions, they discussed issues and dilemmas on an equal footing. Most pairs found their way of working together, adapted to the wishes and capabilities of both partners. Differences between pairs were found to improve the discussions.
We co-created a prolonged side-by-side programme for pairs of patient representatives and researchers, to stimulate mutual learning from the start and throughout the research projects. The programme proved feasible for groups with different research types and health conditions. It fulfils an unmet need for researchers, patients and funders.
患者参与在研究项目的最初阶段最为常见。尽管初衷良好，但在整个研究过程中保持有意义的合作似乎并非易事。已经开发了一些针对研究人员和患者的培训项目，以促进持续参与。这些大多是在项目开始时为研究人员和患者分别举办的一次性培训课程。我们旨在为患者代表和研究人员共同创建一个为期较长的并行项目，以从一开始并在整个研究项目中促进相互学习。
我们为4至5对共同开展研究项目的研究人员和患者代表制定了一个为期2至3年的小组培训和同伴支持项目。该项目耗时30小时，分6至8次会议进行。主要目标是相互的双向学习，并在整个研究项目中维持合作。从一开始，就指导这些配对人员讨论沟通、角色、期望和责任，以防止误解。会议的性质旨在从培训和同伴支持演变为对整个小组的同伴指导和支持。该项目不是一种固定的方法，而是根据具体情况和参与者的需求进行调整。
到目前为止，该项目已应用于5个小组，涉及不同的健康主题和研究类型。各小组内患者对研究方法的先验知识以及研究人员在患者参与方面的经验各不相同。通过并行培训，配对人员之间的权力不平衡得到了减少。所有参与者都获得了患者参与方面的知识和经验。在随后的小组指导会议上，他们在平等的基础上讨论问题和困境。大多数配对人员找到了共同的工作方式，适应了双方的意愿和能力。发现配对人员之间的差异有助于改进讨论。
我们为患者代表和研究人员共同创建了一个为期较长的并行项目，以从一开始并在整个研究项目中促进相互学习。该项目被证明对具有不同研究类型和健康状况的小组是可行的。它满足了研究人员、患者和资助者未得到满足的需求。
