Lived experience, inequalities and the generation of knowledge

Cass Macgregor is a Clinical Specialist Physiotherapist in Chronic Pain and has commenced a PhD jointly funded by NHS Lanarkshire and Glasgow Caledonian University. Here she shares her perspectives on why it is important to understand the lived experience of under researched populations when developing knowledge in the complex field of chronic pain.

Chronic Pain is a highly prevalent long-term condition with a high socioeconomic cost and disease burden (1,2,3). There is also a health inequality aspect, with Torrance et al (2018) reporting that people living in the most deprived Scottish Index of Multiple Deprivation (SIMD) quintile were between three and four times more likely to be prescribed opioids than those living in the least deprived (4). In neighbourhood areas that are more deprived, there is a higher disease burden, higher levels of prescribing, more comorbidities, poorer mental health (5) and more people experience more severe pain (6,7). Socioeconomic factors such as educational level, household or annual income or neighbourhood deprivation are considered risk factors for chronic pain (8,9,10,11). The chronic pain literature suggests that chronic pain is viewed and understood through the biopsychosocial model and that these factors play a role in the impact of the condition and should therefore be a guiding feature of management approaches (12,13,14). There are calls in the literature for more focus on socioeconomic disadvantage in pain research (10,15), and a further consideration is the issue of how research is produced and that research based knowledge may itself be biased towards participants with capacity to both attend for the duration of studies and to access healthcare, as these participants are used to create the ‘evidence’ (15,16).

The issue of producing research as relevant to the needs of the chronic pain population in Lanarkshire is something I am faced with in my PhD research which I am doing through Glasgow Caledonian University. This will aim to co-create a tool based on acceptance of chronic pain which can be used to guide decisions about healthcare. Acceptance of chronic pain is recognised as both an important behavioural mechanism, and a complex phenomenon that can be understood thorough a biopsychosocial lens (17,18). The dominant method of measuring this phenomenon, the Chronic Pain Acceptance Questionnaire has been found lacking in psychometric properties (19,20). The PhD research will therefore require to generate knowledge about this phenomenon from the relevant population with lived experience of acceptance of chronic pain. In 2018 the CMO (21) called for health care professionals (HCPs) to amplify the voices of those who bear the consequences of health inequalities as part of the solution for improving the situation. Community based participatory research approaches are also suggested as helpful in bridging the gap between science and practice particularly in underserved populations where health and social inequalities are issues (16). Therefore, the PhD research will aim to select research participants from within SIMD quintiles 1 and 2 and use a community based participatory approach. This prevents the research by default being set in a wealthier area, although recruitment may prove more challenging.

Consideration of how lived experience, social situation and to extend this, power and privilege affect knowledge generation and healthcare provision is timely. Currently the NHS has begun to offer many services using telehealth due to the Covid pandemic and there are concerns at the impact on health inequalities (22) and the issue of digital exclusion becomes a feature in this with one in eight adults not using the internet, and households with lower incomes in more deprived areas less likely to have access to the internet (23). Another factor is the many different lived experiences of the lockdown necessitated by the pandemic. The Deep End Group which covers GP practices in deprived areas of Glasgow, raise several different social factors related to the experience of their patients during the pandemic including isolation, economic and food insecurity, unhealthy coping behaviours, higher frequency of letters from A & E of domestic abuse incidents (22). The lived experience of those rapidly §implementing the new digital services will likely be different to those requiring the services most. The intersectional nature of power and the impact these inequalities have on health have been raised by Public Health Scotland who also suggest that lived experience is important in understanding this (24). This issue was also raised by the Black Lives Matter campaign- the lived experience of being a white person is different to that of a black person, and will open more doors in a society in which racial bias, both conscious and unconscious, exists. How can this acknowledgement of differentials in power and lived experience influence our practice and research going forwards? While my PhD research will not change the world and does not provide these answers, the process of taking a step back and spending time examining the research through the social lens of bio-psych-social model feels like time well spent. Although, as with every step of my PhD so far, it leads to that uncomfortable feeling of being less certain about the world than I was at the start.



Follow her on Twitter: @MacgCass



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