Research Ethics BC’s Advisory Council member Jim Mann is an educator, advocate, and champion for patient-engaged research, in particular research involving people living with cognitive impairments such as dementia. Recently Jim sat down via Zoom with REBC’s Education and Communications Coordinator, Paola Pinto Vidal, to discuss some key reflections and how REBC can help lift patient voices up.
During the last REBC advisory council meeting in May 2021, Jim presented his insights from a recently published article entitled Involving elderly research participants in the co-design of a future multi-generational cohort study by Jack S. Nunn and colleagues (2021). A key takeaway from this article for Jim is that people living with cognitive impairments too often are confronted with assumptions or preconceived notions that these patients require protection because of their “vulnerability”. In the Nunn article, the research team became aware of their own unconscious bias when reflecting on being doubtful at first that patient-participants without a scientific background could provide valuable input to the research study design and improve patient recruitment and retention.
Jim spoke on the persistence of unconscious bias within the research context and his concerns over the use of terms such as “capacity” without a definition to reference for example within templates for informed consent.
“There is a flawed assumption that [living with a] cognitive impairment means they cannot provide consent for themselves, or they cannot communicate their wishes” Jim states, “even if the person is not able to communicate verbally, the capacity might still be there.” Jim provided an example from the UK called Talking Mats that can be used as an alternative tool to verbal communication.
Jim’s passion and dedication to patient-engaged research and knowledge translation is palpable as he speaks about reading CIHR’s Ethics Guidance for Developing Partnerships with Patients and Researchers as a “fascinating document”, but he keenly observes that there still remains a tension between what policy recommends and how they are actually implemented in practice.
This is critically important to Jim as he emphasizes that “[Patients] are the only ones who will be able to tell you about their own lives.” Going to the caregiver or ‘proxy’ and getting their input about the patient’s life is not the best or most accurate way to get information that ultimately will impact their experience through the healthcare system.
Understanding what people are experiencing in their everyday lives is critical to the development of sound ethical research, yet historically, research involving people with cognitive impairments (and many other marginalized groups) have been excluded from research both as active participants and until recently, as members of the research team.
Thanks to individuals such as Jim, patients are becoming more actively involved in research as patient-partners and through the work of CIHR’s Strategy for Patient Oriented Research (SPOR). Jim is confident that knowledge translation is key and that Research Ethics Boards (REBs) are in a critical position to ensure that patients are appropriately involved in research.
“Ethics boards [are] in the best position to question researchers as to why they are not including patient partners on their research project,” Jim notes, “and a positive outcome may be creating a feedback loop so that this information goes back to the boards.”
As a result of Jim’s presentation, REBC’s Advisory Council has committed to reevaluating informed consent templates through working groups that will involve patient partners and not only REB administrators. This is a small but important first step towards ensuring that patient’s voices and other marginalized groups and communities will be heard and will make a real world impact on health research in the province.