Written by Marie-Eve Laforest, member of the 2024 CanFASD Trainee Program.
My name is Marie-Eve Laforest, and I am a Nursing professor at the Université de Moncton in New Brunswick (NB). During my journey from being a pediatric nurse to the beginning of my research career, my interest in understanding and working with young people who have different ranges of disabilities has always driven me. Last Fall, I was introduced to the field of fetal alcohol spectrum disorder (FASD) research. I am now co-leading a research project that aims to understand the NB youths’ experience during the pre-referral period to FASD diagnosis.
I would like to specifically share my experience co-leading a research project with patient research partners. These partners’ unique perspectives have enriched my first experience with patient-oriented research.
The Endless Waiting Game
The Endless Waiting Game, a patients-researchers co-led qualitative study on New Brunswick youths’ experiences seeking an FASD referral project, stems from a previous study. The previous study demonstrated that between 2021 and 2022, youths consulted with multiple healthcare professionals. The youths received 3-4 medical diagnoses before being referred to the NB Centre of Excellence. Because individuals with FASD require ongoing support across the lifespan (Cook et al., 2021), missed referrals for FASD diagnosis can have serious implications for these youths’ well-being and developmental trajectories, as proper diagnosis allows access to appropriate support services (Waite & Burd, 2023) and interventions (Chasnoff et al., 2015). Therefore, we believe that the pre-referral trajectory warrants further investigation.
Guided by the CIHR’s Patient-Oriented Research Framework and Maritime SPOR SUPPORT Unit (MSSU) principles, we hope our study will produce information that policymakers and decision-makers in FASD healthcare can use to improve the pre-referral trajectory and overall patient care.
What exactly is patient-oriented research?
I have learned that patient-oriented research is a powerful collaboration between researchers and individuals with first-hand experiences (in-body or in-home). These individuals bring their expertise to every aspect of the research. They play an active role in conducting the research, from establishing research priorities to knowledge translation. This partnership ensures that research projects are aligned with the needs of those directly affected, making them more relevant and the outcomes more meaningful and impactful (CIHR, 2019).
Engaging in patient-oriented research can benefit and challenge both researchers and patient research partners. To achieve successful patient-oriented research, researchers and patients need competencies in communication, leadership, patient-centredness, interpersonal and individual skills, and team functioning.
Working with FASD patient research partners
Although patient-oriented research has gained popularity, this co-led research project is my first experience working with patient research partners. Initially, I was unsure how to involve patient research partners in the process. I didn’t realize how much involvement every decision required, and how to strike a balance between too much and too little involvement. I quickly realized the value patient partners brought and that I had much to learn from their unique experiences.
Their knowledge has helped to determine inclusion criteria, define recruitment strategies, refine the interview guide, and more. Their genuine interest in doing and understanding research also excited me. Letting go of preconceived notions about patient-oriented research and viewing patient research partners as equal researchers was essential to ensure the true integration of patient-oriented research principles.
Nonetheless, being new to FASD and patient-oriented research, challenges were bound to happen. As a team, we had to find ways to overcome those challenges. Open communication between all team members helped clarify expectations and any ambiguity related to the research project. Verifying that all members understood what was discussed and adjusting our vocabulary when discussing abstract research concepts were also important.
As researchers, we sometimes had to remind each other to adjust our vocabulary and assist each other with explanations. Thus, having a young individual with in-body experience and his parent as research partners was helpful for our team, as they could support each other and share their understanding through the process. Moreover, planning a meeting to check in with the patient research partners was also helpful in reflecting on what could be improved. Working with patient research partners is an ongoing learning experience for all team members.
Lessons learned using Patient-Oriented Research
Although there is literature to support patient-oriented research and guide researchers in engaging patients in research, I believe that the following strategies have helped our team in this first patient-oriented research experience.
- Being open to learning from the patient research partners’ experiences and allowing everyone’s expertise to shine.
- Being honest and taking the time to build a trusting relationship with team members.
- Having clear communication is vital to excellent team functioning.
- Adjusting the vocabulary used to discuss the research aspects.
- Giving time and space for patient research partners to share their opinions and knowledge.
- Clarifying everyone’s roles (and aligning the level of involvement with the patient research partners’ expectations).
- Doing periodic check-ins between researchers and patient research partners.
- Maintaining a respectful and compassionate research environment.
I now realize that having more training in patient-oriented research could have helped to better engage with patient research partners. Nonetheless, I believe that my knowledge, attitudes, and beliefs in engaging with patient research partners were beneficial in this experience.
Finally, I want to thank my research colleagues, who helped me reflect on this experience and acknowledge the vital contributions of our patient research partners. I hope that this collaboration will lead to many more.
