Co-creation of a qualitative fertility research study to understand waiting time experiences through patient engagement
Bibliographic record
Abstract
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. 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. 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. 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. 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. A diagnosis of infertility is becoming more common across Canada and the world. As a result, more research is needed to improve the quality of care for those experiencing infertility. One way to do this is by working with individuals with lived experience of infertility to ensure the research focuses on pressing issues for that population. This study aims to enhance fertility research by involving patients as patient partners in the planning phases of a qualitative fertility study. Three patient partners of the female sex (identifying as either female or non-binary) joined a research team to co-create a qualitative fertility study that sought to understand the experience of waiting for fertility services. The co-creation process involved a series of discussion group sessions. Patient partners were asked how they felt about participating in the collaborative process using two evaluation questionnaires, and their answers showed that they felt satisfied with participating in the research. The co-creation of a qualitative research study with individuals with lived experience of infertility changed the direction of the research to be more inclusive and empowering for individuals waiting for fertility services.
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How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.051 | 0.000 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.004 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.001 |
| Research integrity | 0.000 | 0.002 |
| Insufficient payload (model declined to judge) | 0.002 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one teacher head, not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".