Patient engagement in fertility research: bench research, ethics, and social justice

Research Involvement and Engagement

Perry R. Fleming¹  Jessica Sterling²  Ginny Cartee²  Melanie Cozad³  Coen Hasenkamp⁴  Makayla M. Swygert⁴  Renee J. Chosed⁵  William E. Roudebush⁵  Rebecca Russ-Sellers⁶  Ann Blair Kennedy⁷ 

[1] Clemson University, Clemson, South Carolina, USA;University of South Carolina, Patient Engagement Studio, Columbia, South Carolina, USA;University of South Carolina, Patient Engagement Studio, Columbia, South Carolina, USA;University of South Carolina, Patient Engagement Studio, Columbia, South Carolina, USA;University of South Carolina, Arnold School of Public Health, Columbia, South Carolina, USA;University of South Carolina, Patient Engagement Studio, Columbia, South Carolina, USA;University of South Carolina, School of Medicine Greenville, Columbia, South Carolina, USA;University of South Carolina, School of Medicine Greenville, Columbia, South Carolina, USA;University of South Carolina, School of Medicine Greenville, Columbia, South Carolina, USA;University of South Carolina, Patient Engagement Studio, Columbia, South Carolina, USA;University of South Carolina, School of Medicine Greenville, Columbia, South Carolina, USA;University of South Carolina, Patient Engagement Studio, Columbia, South Carolina, USA;Prisma Health, Family Medicine, Greenville, South Carolina, USA;

关键词: Patient participation;    Stakeholder participation;    Research personnel;    Reproductive techniques;    RNA sequence analysis;    Trust;    Fertilization in vitro;    Surveys and questionnaires;   

DOI  :  10.1186/s40900-021-00278-x

来源: Springer

【 摘 要 】

BackgroundPatient 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.Main bodyEmbryo+™ 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).ConclusionBench 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.

【 授权许可】

CC BY