Patient and Public Involvement (PPI) in health research is gaining increased attention and acceptance worldwide. Reliable measurements are crucial to accurately assess, monitor, and evaluate patient involvement efforts in research. The Patient Engagement in Research Scale (PEIRS-22) measures meaningful patient and family caregiver engagement in research. This study focuses on three primary objectives: (1) translation of the PEIRS-22 from English to Danish, followed by linguistic validation and cultural adaptation; (2) assessing the applicability of the Danish PEIRS-22; and (3) focus group interviews to explore the user experiences of PPI. A three-phase multi-method study was conducted. In phase one, the PEIRS-22 was translated, linguistically validated and culturally adapted to Danish. In phase two individuals from three distinct patient cancer advisory boards responded to the Danish version of PEIRS-22 to assess its applicability. Three focus group interviews were conducted in phase three, involving individuals from three patient cancer advisory boards. The translation process resulted in a Danish version of PEIRS-22, conceptually and culturally equivalent to the English version. Overall, among individuals of the three advisory boards (n = 15) the applicability was found to be satisfactory, with no missing data and all items completed. The total PEIRS-22 score among the three advisory boards was 85.2 out of a possible 100, with higher scores indicating greater meaningful involvement. A nested sample of the three patient cancer advisory boards (n = 9) participated in focus group interviews. The analysis yielded four themes: (1) The Danish PEIRS-22 captured the intended cultural meaning and contributed to self-reflection, (2) Internal motivation is a driver for involvement (3), Involvement brought a personal sense of empowerment and (4) Meaningful involvement collaborations are fostered by a trustful atmosphere. The PEIRS-22 questionnaire has been translated, linguistically validated, and culturally adapted into Danish. We propose that the PEIRS-22 is now ready for use in Danish populations. This study provides a Danish version of the questionnaire that can be used to develop patient-centred practices and foster meaningful involvement and collaborations between patients and researchers in the field of cancer research in Denmark. Personal benefits of participating in PPI can vary, and we recommend using PEIRS-22 in conjunction with a qualitative approach to better explore perspectives on meaningful involvement. The study was registered prospectively on October 22, 2022, by the Danish Data Protection Agency (jr. nr. P-2022–528). Patient and public involvement (PPI) in research can improve research practices by ensuring that patients' voices are heard. Individuals’ lived experiences and unique viewpoints can contribute to refining research aims, ensuring they align with the needs and priorities of the target population. There is a growing interest in inviting patients into the research team as patient partners, for example, by establishing patient advisory boards. PPI can also involve caregivers and other stakeholders who are not usually thought of as members of the research team. For that reason, broadening our understanding of establishing meaningful PPI starts with measuring patient and family caregiver involvement. As such, the Patient Engagement In Research Scale (PEIRS-22) has been developed in the English language to measure meaningful patient and caregiver involvement. In this study, we aimed to (1) create a Danish version of the PEIRS-22 that respects any unique feature of Danish people, (2) assess the applicability of the Danish PEIRS-22, and (3) via focus-group interviews explore the user experiences of PPI. The patients and caregiver who were interviewed as part of the translation process expressed that the PEIRS-22 was easy to understand and captured the intended meanings. Fifteen other patient partners responded to the Danish version of PEIRS-22, and nine of them participated in the focus group interviews. One result was that creating a trusting and social atmosphere within the research group is important for promoting a personal sense of involvement.

中文翻译：

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患者参与研究量表 (PEIRS-22)：丹麦语翻译、适用性和用户体验

健康研究中的患者和公众参与（PPI）正在全世界范围内获得越来越多的关注和接受。可靠的测量对于准确评估、监测和评估患者参与研究的努力至关重要。患者参与研究量表 (PEIRS-22) 衡量患者和家庭护理人员对研究的有意义的参与。本研究重点关注三个主要目标：(1) 将 PEIRS-22 从英语翻译为丹麦语，然后进行语言验证和文化适应；(2) 评估丹麦PEIRS-22的适用性；(3) 焦点小组访谈，探讨 PPI 的用户体验。进行了三阶段多方法研究。在第一阶段，PEIRS-22 被翻译、语言验证和文化适应丹麦语。在第二阶段，来自三个不同患者癌症咨询委员会的个人对丹麦版本的 PEIRS-22 做出回应，以评估其适用性。第三阶段进行了三次焦点小组访谈，涉及来自三个患者癌症咨询委员会的个人。翻译过程产生了 PEIRS-22 的丹麦语版本，在概念和文化上与英语版本相同。总体而言，三个咨询委员会的个人 (n = 15) 的适用性令人满意，没有丢失数据，所有项目均已完成。三个咨询委员会的 PEIRS-22 总分为 85.2 分（满分 100 分），分数越高表明参与越有意义。三个患者癌症咨询委员会的嵌套样本（n = 9）参加了焦点小组访谈。分析得出四个主题：(1) 丹麦 PEIRS-22 抓住了预期的文化意义并有助于自我反思，(2) 内部动机是参与的驱动力 (3)，参与带来了个人赋权感，(4) ) 信任的氛围可以促进有意义的参与合作。PEIRS-22 调查问卷已被翻译成丹麦语，并经过语言验证和文化调整。我们建议 PEIRS-22 现已准备好在丹麦人群中使用。本研究提供了丹麦版本的问卷，可用于发展以患者为中心的实践，并促进患者和研究人员在丹麦癌症研究领域的有意义的参与和合作。参与 PPI 的个人收益可能会有所不同，我们建议将 PEIRS-22 与定性方法结合使用，以更好地探索有意义参与的观点。该研究于 2022 年 10 月 22 日由丹麦数据保护局 (jr. nr. P-2022-528) 前瞻性注册。患者和公众参与研究可以通过确保听到患者的声音来改善研究实践。个人的生活经历和独特的观点有助于完善研究目标，确保它们符合目标人群的需求和优先事项。人们越来越有兴趣邀请患者作为患者合作伙伴加入研究团队，例如通过建立患者咨询委员会。PPI 还可以涉及通常不被视为研究团队成员的护理人员和其他利益相关者。因此，要扩大我们对建立有意义的 PPI 的理解，首先要衡量患者和家庭护理人员的参与程度。因此，患者参与研究量表 (PEIRS-22) 已用英语开发，用于衡量有意义的患者和护理人员的参与。在本研究中，我们的目标是 (1) 创建丹麦版本的 PEIRS-22，尊重丹麦人的任何独特特征，(2) 评估丹麦 PEIRS-22 的适用性，以及 (3) 通过焦点小组访谈探索 PPI 的用户体验。在翻译过程中接受采访的患者和护理人员表示，PEIRS-22 易于理解并抓住了预期含义。其他 15 名患者伴侣对丹麦版 PEIRS-22 做出了回应，其中 9 名患者参加了焦点小组访谈。结果之一是，在研究小组内营造一种信任和社交氛围对于促进个人参与感非常重要。