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

Abstract

Background 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. Main body 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). Conclusion 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.

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“…The research team met with patient experts on June 30, 2022, prior to interviews with primary care practices. In accordance with standard PES processes, 18 patient experts were provided the health system SDOH screening tool as presession reading material. Discussion topics at that meeting included screening and referral processes (eMethods 2 in Supplement 1 ).…”

Wonderings to research questions: Engaging patients in long COVID research prioritization within a learning health system

“…The Patient Engagement Studio (PES) at the University of South Carolina is a pivotal component within the Health Research Collaborative , a framework of Learning Health System, that unites Prisma Health System (the largest nonprofit health organization in South Carolina) with three academic partners (Clemson University, Furman University, and the University of South Carolina). 13 , 14 The PES is a dynamic hub where patients, caregivers, community groups, health system innovators, clinicians, and academic researchers converge to collaboratively produce impactful research and drive innovations that advance both health outcomes and research methodologies. 13 , 14 Much of the work done by the PES began as an effort to involve patients in the development of research and health system innovations and serves as the central locus for the innovative methodology employed in this study.…”

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