Working together makes us better: Including lived experience in research

Abstract

What do we understand by lived experience and how do we communicate it? The origin of the term is attributed to a combination of the two German words Erlebnis and Erfahrung. Both can be translated with ‘experience’, but Erlebnis conveys more the immediate experiencing of something (e.g. ‘I am experiencing pain …’) while Erfahrung is the accumulation of meaningful experiences over time (e.g. ‘In my experience this procedure is painful …’).¹ For decades the lived experience of individuals with impairments or conditions has been assumed (e.g. ‘it must be hard to live with CP’) by the professionals trained to support, treat, and research them, but likely have not lived with the impairment. The idea of asking and valuing their perspectives systematically in health research is relatively recent, with the focus on defining new endpoints for research studies with the hopes to measure what matters.²

Capturing the lived experience of people with impairments is fundamentally important to creating a social, attitudinal, and physically inclusive environment. We do not want to go back to times when disability was associated with burden. A modern society should value all varieties of human existence.

The recent COVID-19 pandemic has revealed the enormous gaps created by a one-size-fits-all approach.³ We need more than the so-called personalized medicine of custom-designed drugs and genetic therapies; we need a personalized approach to care, support, and intervention. Such an approach requires systems of integrated support (health, educational, and social) that are flexible and allow for individualized solutions.

How can research help to develop such solutions? By listening to the people whose participation in life is restricted. Researchers at CanChild have a history of 35 years of involving individuals with lived experience and their families in research. As we engaged with disabled individuals over the years (including spontaneous clinical encounters with family members or with open calls for participation), we learned there were significant gaps between researchers and individuals/family members in understanding each other's experience. What is the reality, and which are the constrains that researchers must deal with? How can we come up with meaningful, valid, and feasible research questions? What is it that families want for their children with impairments and what might those children want from research?

Such questions led to the development of our Family Engagement in Research Program.⁴ Embedding lived experience into research (and consequently into policies) requires more than just a seat at the table. Besides calculating the right sample size, engaging in participatory research requires considerations about power dynamics, representativeness, intersectionality, and the variety of contextual factors that determine the lives of the population to be studied. Furthermore, the co-creation of solutions that are meaningful and tailored to the needs of individuals with disabilities is an important approach to establish partnerships between researchers and people with lived experience and answer meaningful and feasible research questions.⁵

Where does this lead us? In the same way that we started this editorial by referencing Erfahrung as the accumulation of meaningful experiences over time by individuals with lived experience, we hope that researchers, clinicians, educators, and policy makers benefit from the accumulation of experiences provided by systematically including patients and families in their projects, practice, and regulations. This can eventually lead to meaningful and impactful changes as envisioned in Canada's recent Disability Inclusion Action Plan (https://ccrw.org/disability-inclusion-action-plan-diap/).