The View From the Inside: Positionality and Insider Research

Qualitative research has traditionally prioritized consumer and community engagement (Attree et al., 2011; SarramiForoushani et al., 2014). Similarly, clinical research is placing increasing value on consumer and community engagement, commonly labeled as “patient and public involvement” (PPI; Boivin et al., 2018; Lalani et al., 2019). PPI aims to enhance the quality, acceptability, and relevance of research (and priority setting in research) to ensure that issues of importance to patients, their families, and the broader public are addressed (Brett et al., 2014). It has been acknowledged that PPI can improve the quality of health-care delivery and patient outcomes (Boaz et al., 2016). However, despite the demonstrated positive impacts of PPI, many research projects are still conceptualized and undertaken with relatively minimal input from those with lived experience of the condition (Vayena et al., 2016). Most commonly, PPI is sought at the conceptualization phase of research where topics of prioritization are identified; yet, there may be minimal input after this stage (Manafo et al., 2018). These limitations have motivated patient-led research, where an individual with lived experience of a health condition is taught research-related skills to examine the topic of interest from conceptualization through to dissemination of outcomes (Grant et al., 2019; Streuli & Vayena, 2015). The research program that I conceptualized, developed, and am currently undertaking with the support of my supervisory team was borne out of my lived experience as a young adult with inflammatory arthritis. The concept where I am the researcher is known as “insider research. ” Within the insider research paradigm, I, the researcher, relate to my participants’ identity and language through personal arthritis-attributable experience (Greene, 2014). Insider research, which occurs through a process of positionality, involves intentionally aligning one’s self-interests with one’s research (Jacobson & Mustafa, 2019). There are advantages and disadvantages of conducting insider research in the qualitative research sphere. Some advantages of an insider position include (1) facilitating a nuanced perspective that builds credibility with participants, (2) promoting an equalized relationship between the researcher and participants, and (3) building rapport between the researcher and participants. In contrast, potential disadvantages can include compromised researcher objectivity and professionalism and participant misunderstanding of a researcher’s capacity to provide health advice (Chavez, 2008). As a young adult with inflammatory arthritis, I am particularly interested in the impacts of musculoskeletal conditions on working-age populations. There is a large body of research conducted with pediatric populations with arthritis (Cartwright et al., 2015; Cohen et al., 2017; Soriano LeBovidge et al., 2003) as well as with older adults with arthritis (Focht et al., 2017; Havens et al., 2017; Song et al., 2006). However, there is a paucity of research dedicated to working-age populations. This is particularly concerning, given that in Canada, over 50% of the population with arthritis are aged under 65 years (Statistics Canada, 2019), and similarly in Australia, 50% of the population with arthritis are of working age (Australian Bureau of Statistics, 2018). A large number of Australians are forced into early retirement each year, and females retiring early have been found to accumulate, on average, 83% less in retirement savings than their healthy peers (Schofield et al., 2013). Based on my lived experience and personal interests, and in recognition of the limited research undertaken to date, our research program seeks to explore the broader impacts of arthritis (beyond joint pain and stiffness) with respect to work implications and