Fleming Perry R, Swygert Makayla M, Hasenkamp Coen, Sterling Jessica, Cartee Ginny, Russ-Sellers Rebecca, Cozad Melanie, Chosed Renee J, Roudebush William E, Kennedy Ann Blair
Clemson University, Clemson, South Carolina, USA.
University of South Carolina, Patient Engagement Studio, Columbia, South Carolina, USA.
Res Involv Engagem. 2021 May 12;7(1):29. doi: 10.1186/s40900-021-00278-x.
Patient and Public Involvement (PPI) in research is increasingly being utilized to better connect patients and researchers. The Patient Engagement Studio (PES) supports PPI in research by working directly with researchers throughout various stages of their projects. Recently, two researchers presented to the PES for assistance with their project, Embryo+™. The purpose of Embryo+™ is to decrease miscarriage rates using RNA sequencing technology that screens for the most viable embryos. To date, no examples of PPI directly in the planning or implementation of bench research concerning in vitro fertilization and embryo transfer have been identified.
Embryo+™ researchers met in-person with the PES two times (fall 2019; each meeting had 9 PES members in attendance) for initial feedback and protocol development. After these meetings, PES leadership and Embryo+™ researchers decided that the unique nature of the project merited a PPI evaluation. Subsequent evaluation of engagement efforts occurred by reviewing the PES reports for the Embryo+™ researchers, conducting two recorded web-based discussion meetings with the PES (summer 2020; meeting 1 n = 7; meeting 2 n = 6), and a brief survey (n = 13). The discussion meetings provided an opportunity for the PES members to define engagement themes through consensus via verbal agreement to the studio director's periodic summaries during the discussions. Combining survey results and PES themes allowed for a broad discussion for meaningful engagement. The Embryo+™ researchers established trust with the patients by changing some of their language in response to patient suggestions, allowing for unintended ethical conversations, and implementing the patient developed protocols. Overall, the patient experts thought this project was very meaningful and valuable, quantified by a mean loyalty score 89.43 (s.d. 10.29).
Bench science researchers may need additional PPI training prior to engaging with patient groups. PPI in this project was successful in large part due to this training, where the director emphasized the importance of gaining trust with the patients. The researchers applied what they learned and several examples of how to develop trust with patients are discussed. If trust is established, PPI in an ethically charged, basic science research study can be both valuable and successful.
研究中的患者和公众参与（PPI）越来越多地被用于更好地连接患者和研究人员。患者参与工作室（PES）通过在研究项目的各个阶段直接与研究人员合作来支持研究中的PPI。最近，两名研究人员向PES寻求其项目Embryo+™的协助。Embryo+™的目的是使用筛选最具活力胚胎的RNA测序技术来降低流产率。迄今为止，尚未发现PPI直接参与体外受精和胚胎移植的实验室研究的规划或实施的实例。
Embryo+™的研究人员与PES进行了两次面对面会议（2019年秋季；每次会议有9名PES成员出席），以获取初步反馈并制定方案。这些会议之后，PES负责人和Embryo+™的研究人员决定，该项目的独特性质值得进行一次PPI评估。随后，通过审查为Embryo+™研究人员准备的PES报告、与PES进行两次网络记录讨论会议（2020年夏季；会议1有7人参加；会议2有6人参加）以及一项简短调查（13人参与），对参与工作进行了评估。讨论会议为PES成员提供了一个机会，通过在讨论过程中对工作室主任的定期总结达成口头共识，来确定参与主题。将调查结果和PES主题结合起来，便于进行关于有意义参与的广泛讨论。Embryo+™的研究人员根据患者的建议更改了部分措辞，允许进行意外的伦理讨论，并实施患者制定的方案，从而与患者建立了信任。总体而言，患者专家认为这个项目非常有意义且有价值，平均忠诚度得分为89.43（标准差为10.29）。
实验室科研人员在与患者群体接触之前可能需要额外的PPI培训。本项目中的PPI之所以成功，很大程度上归功于这次培训，培训中主任强调了赢得患者信任的重要性。研究人员应用了所学内容，并讨论了几个如何与患者建立信任的例子。如果建立了信任，在一项涉及伦理问题的基础科学研究中进行PPI既会有价值又会取得成功。
