Co-creation of a qualitative fertility research study to understand waiting time experiences through patient engagement.

Background: Infertility affects an estimated 8 to 12% of the global population and approximately one in six heterosexual couples in Canada. To access fertility services in Newfoundland and Labrador, Canada, individuals with an infertility diagnosis wait for extended periods, and this waiting period has been associated with psychological distress. However, this experience of waiting has not been well studied, and several gaps in fertility research exist. The inclusion of persons with lived experience of infertility in the creation of studies related to infertility may improve research outcomes and create patient empowerment.

Aim: To collaboratively develop a qualitative research project focused on understanding the waiting experiences of patients seeking fertility services in Newfoundland and Labrador, utilizing patient engagement initiatives and involving individuals with infertility experiences.

Methods: Three patient partners who represented individuals awaiting fertility services were recruited to be research team members. Patient partners were eligible to participate as research team members if they identified as either female or non-binary (to effectively represent the female and non-binary target population in the co-produced qualitative study) and had lived experience waiting for fertility services in the province. The research team developed a detailed patient engagement plan following the International Association for Public Participation framework (IAP2). Data from research team discussion groups were documented using a meeting minutes template. Two questionnaires from the Public and Patient Engagement Evaluation Tool were employed to assess patient partners' impact and satisfaction with the research process.

Results: Patient partner involvement and input helped the co-creation process by refocusing the qualitative study's research aim to empower patients. To accomplish the new research aim, the patient partners refined the study's methodology through adjustments to the research design, protocol, interview guide, and participant criteria of the upcoming qualitative study. The PPEET analysis demonstrated high satisfaction with engagement and a high perceived value of patient contributions in the co-creation of the research study. In turn, the PPEET results indicated that patient partners had a comprehensive understanding of their roles for engagement and were satisfied with their involvement in the various research activities.

Conclusions: In conclusion, using patient engagement to co-create a qualitative fertility study to understand patients' experiences while waiting for fertility services resulted in significant changes to the proposed methodology and research priorities and helped address knowledge gaps in existing fertility research. Most importantly, the patient engagement approach helped foster an inclusive and empowering environment for patient partners to contribute to fertility research.