Article by Nayaab Punjani
Graphic design by Sherry An
Occupational therapy aims to help patients improve limb function and adapt to sensorimotor injuries so they may engage in activities that are most meaningful to them, thereby ameliorating the quality of life and autonomy of children experiencing brachial plexus injuries. The brachial plexus involves a series of nerves that bridges motor and sensory signals between the cervical spinal cord and upper limbs. Damage to the brachial plexus may occur through injuries during birth, trauma, or autoimmune neurodegeneration.1 Severity of damage to the brachial plexus can determine the degree of loss of active range of motion and recovery. These physical impairments alongside the patient’s needs and goals, determine the impact to which the condition affects their life. Thus, it is important to consider the patient’s perspective to conduct meaningful and relevant research in this field.
The Canadian Institutes of Health Research (CIHR) defines patient engagement as going beyond the common role of a research participant; becoming partners to help design the research protocol and framing findings for policies.2 Dr. Emily Ho is an occupational therapist and research director in the Division of Plastic and Reconstructive Surgery at the Hospital for Sick Children and an assistant professor in the Department of Occupational Science and Occupational Therapy. Her work highlights the importance of patient engagement among youth with brachial plexus injuries.
Starting off as an occupational therapist on a multidisciplinary brachial plexus team, Dr. Ho’s role was to find a way to assess upper extremity functional capacity to help determine the potential for reconstructive surgery. However, no systematic tool existed for this purpose. Alongside a multi-disciplinary team consisting of a physiotherapist, plastic surgeon, and other colleagues, Dr. Ho developed a quantitative measure early in her career. The clinical need for reliable and valid outcome measures motivated Dr. Ho to pursue a career in research.
Dr. Ho went on to obtain a Master of Education degree and subsequently a PhD at the University of Toronto. In her PhD thesis, Dr. Ho combined quantitative and qualitative research, an approach more commonly known as mixed methods research, while examining shared decision making among patients and healthcare providers. Dr. Ho explains, “the qualitative piece was where the huge learning happened, and that’s what transforms who I am now. I think whatever journey any student takes, make sure to find a research topic and area that challenges you and a supervisor in a program that stretches you.”
Dr. Ho began to examine shared decision making through interviewing families. “Prior to that I was looking at clinical outcomes, focused on measuring what the children can do. Then all of a sudden, through engaging in in-depth interviewing, I stopped and listened. I heard their voices and began to understand a bit more about their journey, and that transformed what I now think of in terms of priority setting for research.”
Her unique position as a clinician investigator permits Dr. Ho to incorporate patient engagement in her research and clinical practice. Dr. Ho stresses the importance of having families involved at each step of the research process. In her work, families are involved in developing interview guides and surveys, and providing feedback on new tools. Families are also approached to provide input on whether research outcomes resonate with their lived experiences, which allows for more meaningful research.
Through her engagement with youth who have brachial plexus injuries, Dr. Ho highlights the importance of giving youth a chance to be involved in the research process. This can take place through leadership roles, being invited to speak on youth panels, and being a part of her advisory group. Being able to give back to others through their experience and peer-to-peer interventions also benefits the youth in their own health journey.
Dr. Ho works with youth from newborns to teenagers and recognizes that their needs change as they transition into adulthood. Her current work aims to expand transitional care into adulthood with an emphasis on community care and mental health support, both of which are important to patients. Dr. Ho emphasizes, “if we stay as clinicians and we stay as researchers within our own little realm (e.g., childhood concerns), and we do not branch out and ask patients, their families, the community what is important, then we are not measuring what is meaningful and we are not producing what is meaningful.” Through patient interactions Dr. Ho determined the need for prioritizing transitional care research to enhance quality of life and access to care beyond childhood.
When considering the future of patient engagement in research, Dr. Ho feels it is not sufficient to only give a voice to patients. There needs to be a standardized process in place for having patients involved in the co-development and co-creation of every step of research, and this effort will take time. Having a research body like CIHR involved in funding patient-oriented research is a big step forward. However, having access to patients without clinical connections may not be easy and alternative strategies are needed to connect patients with researchers.
She offers advice to students aiming to incorporate patient engagement in the research process. She mentions, spending time with patient partners and stakeholders in the field you are interested in will allow you to learn more and network. Having the chance to ask simple open-ended questions like “what do you think about this project,” leaves room for the responder to provide input on any aspect of the research process. This approach provides insight on what they prioritize and often offers a unique lens.
Dr. Ho summarizes the steps we need to take to ensure our research is patient-oriented. First, we must make research more relevant and meaningful to patients. Second, we need to give patients a chance to have their voice heard and discuss what is important to them. Lastly, it is important to use the correct channels (i.e., social media) to disseminate our findings and reach the target audience.
To conclude, Dr. Ho has some general advice to succeed as a graduate student, “build a strong team to give you mentorship, and then look at the heart of what drives you and follow your passion. For me, my passion is to positively affect the lives of those I work with and that drives me to improve and move forward the scientific knowledge behind my work.”
- Brachial Plexus Injury [Internet]. [cited 2022 Mar 9]. Available from: https://www.hopkinsmedicine.org/health/conditions-and-diseases/brachial-plexus-injuries
- Government of Canada CI of HR. Patient engagement – CIHR [Internet]. 2012 [cited 2022 Mar 9]. Available from: https://cihr-irsc.gc.ca/e/45851.html