Gonzalez Miriam, Ogourtsova Tatiana, Zerbo Alix, Lalonde Corinne, Spurway Amy, Gavin Frank, Shikako Keiko, Weiss Jonathan A, Majnemer Annette
Faculty of Medicine and Health Sciences, School of Physical and Occupational Therapy, McGill University, 3654 Promenade Sir William Osler, Montréal, H3G 1Y5, Canada.
Research Institute of the McGill University Health Centre, 1001 Decarie Blvd, Montréal, H4A 3J1, Canada.
Res Involv Engagem. 2023 Mar 8;9(1):7. doi: 10.1186/s40900-023-00418-5.
Little is known about patient engagement in the context of large teams or networks. Quantitative data from a larger sample of CHILD-BRIGHT Network members suggest that patient engagement was beneficial and meaningful. To extend our understanding of the barriers, facilitators, and impacts identified by patient-partners and researchers, we conducted this qualitative study.
Participants completed semi-structured interviews and were recruited from the CHILD-BRIGHT Research Network. A patient-oriented research (POR) approach informed by the SPOR Framework guided the study. The Guidance for Reporting Involvement of Patients and the Public (GRIPP2-SF) was used to report on involvement of patient-partners. The data were analyzed using a qualitative, content analysis approach.
Twenty-five CHILD-BRIGHT Network members (48% patient-partners, 52% researchers) were interviewed on their engagement experiences in the Network's research projects and in network-wide activities. At the research project level, patient-partners and researchers reported similar barriers and facilitators to engagement. Barriers included communication challenges, factors specific to patient-partners, difficulty maintaining engagement over time, and difficulty achieving genuine collaboration. Facilitators included communication (e.g., open communication), factors specific to patient-partners (e.g., motivation), and factors such as respect and trust. At the Network level, patient-partners and researchers indicated that time constraints and asking too much of patient-partners were barriers to engagement. Both patient-partners and researchers indicated that communication (e.g., regular contacts) facilitated their engagement in the Network. Patient-partners also reported that researchers' characteristics (e.g., openness to feedback) and having a role within the Network facilitated their engagement. Researchers related that providing a variety of activities and establishing meaningful collaborations served as facilitators. In terms of impacts, study participants indicated that POR allowed for: (1) projects to be better aligned with patient-partners' priorities, (2) collaboration among researchers, patient-partners and families, (3) knowledge translation informed by patient-partner input, and (4) learning opportunities.
Our findings provide evidence of the positive impacts of patient engagement and highlight factors that are important to consider in supporting engagement in large research teams or networks. Based on these findings and in collaboration with patient-partners, we have identified strategies for enhancing authentic engagement of patient-partners in these contexts.
对于患者在大型团队或网络背景下的参与情况，我们了解甚少。来自CHILD - BRIGHT网络成员的更大样本的定量数据表明，患者参与是有益且有意义的。为了拓展我们对患者合作伙伴和研究人员所确定的障碍、促进因素及影响的理解，我们开展了这项定性研究。
参与者完成了半结构化访谈，他们是从CHILD - BRIGHT研究网络中招募的。一项以患者为导向的研究（POR）方法，受SPOR框架指导，引领了这项研究。《患者和公众参与报告指南》（GRIPP2 - SF）被用于报告患者合作伙伴的参与情况。数据采用定性内容分析方法进行分析。
25名CHILD - BRIGHT网络成员（48%为患者合作伙伴，52%为研究人员）接受了关于他们在该网络研究项目及全网络活动中的参与经历的访谈。在研究项目层面，患者合作伙伴和研究人员报告了类似的参与障碍和促进因素。障碍包括沟通挑战、患者合作伙伴特有的因素、随着时间推移难以保持参与度以及难以实现真正的合作。促进因素包括沟通（如开放沟通）、患者合作伙伴特有的因素（如积极性）以及尊重和信任等因素。在网络层面，患者合作伙伴和研究人员指出时间限制以及对患者合作伙伴要求过多是参与的障碍。患者合作伙伴和研究人员都表示沟通（如定期联系）促进了他们在网络中的参与。患者合作伙伴还报告说研究人员的特质（如对反馈持开放态度）以及在网络中拥有一个角色促进了他们的参与。研究人员表示提供各种活动以及建立有意义的合作起到了促进作用。在影响方面，研究参与者指出患者为导向的研究使得：（1）项目能更好地与患者合作伙伴的优先事项保持一致，（2）研究人员、患者合作伙伴和家庭之间的合作，（3）基于患者合作伙伴的投入进行知识转化，以及（4）学习机会。
我们的研究结果为患者参与的积极影响提供了证据，并突出了在支持大型研究团队或网络中的参与时需要考虑的重要因素。基于这些发现并与患者合作伙伴合作，我们确定了在这些背景下增强患者合作伙伴真实参与度的策略。
