Creating Real Change: Participation of Patient Partners in the Co-Development and Analysis of Quality Improvement Studies
Thursday, 11th November 2021
About the Session
People with lived experience (PWLE) can be part of many aspects of a research or quality improvement study, but most often participate in carrying out the project rather than being involved in its preparation or the dissemination of the results. By involving PWLE earlier on in the process, studies are more likely to answer questions important to patients and can help give PWLE more ownership and opportunities for advocacy in their care journeys.
Four patient partners (two patients and two caregivers) were recruited to co-develop a semi-structured interview guide. This guide would be used as part of a local quality improvement project to interview patients and their families at a tertiary pediatric centre. The aim of the project is to better understand patient and family experiences with pain management at the hospital, including areas in which the hospital excels in pain care and areas in need of improvement. A physician and knowledge mobilization specialist met with these patient partners to co-develop the interview guide and determine how to best approach participant diversity and possible trauma related to pain experiences. Following an initial brainstorming session, a preliminary interview guide was sent to team members for feedback. A second meeting was held to discuss feedback to the interview guide and to determine a recruitment strategy. Final approval of the guide and recruitment posters took place following the second meeting via email. Meetings took place in the evenings to respect the schedules of patient partners, with patient partner compensation being provided by Solutions for Kids in Pain following the organization’s board-approved guidelines. Two of the patient partners will be involved with the subsequent analysis and dissemination of the data.
Current research highlights that PWLE involved in patient-oriented research value convenience, fair compensation, the opportunity to learn about the research process, and having their contributions be heard and valued. In the current study, patient partners noted that being involved in the study was empowering and that it felt like they were contributing to a redesign of how pain is treated at the hospital: by patients for patients. Redesign stands on the ground of patient-driven feedback, whereby problematic patient experiences are reduced and patients’ pain care is reshaped to adhere to patients’ needs. While interviews of study participants are still ongoing, participants thus far have mentioned their appreciation for the co-design of the interview guide with patient partners — participants view their participation as more meaningful and that their responses will be taken seriously in subsequent improvement initiatives guided by the data.
Co-developing quality improvement studies with PWLE provides patient partners with the opportunity to advocate for better pain care in a tangible way that can lead to direct improvement. By having patient partners co-develop a semi-structured interview guide, questions asked of study participants are pertinent to patients. Participant feedback will then drive improvement initiatives at the hospital, one aspect of which includes providing future patients and their families with opportunities to advocate for better pain care.”