What do social inequities have to do with research participation and how might TRIRPP help?

How might social inequities impact on research participation and how is TRIRPP part of the solution? Social inequities in power, money and resources have been described by Professor Michael Marmot as the avoidable drivers of social, and subsequently health, inequalities.

These inequalities mean that some individuals and communities have fewer emotional, financial, time and other resources to access health and social care services. Thus, access may be impeded by barriers such as lack of transport, language, literacy, mental health problems, ‘zero hours’ contracts which do not allow paid time to attend appointments, unpaid caring responsibilities, coercive relationships or what has been recently termed ‘digital poverty’ (characterised by inability to access the internet for a variety of reasons). It stands to reason that all these issues might equally impact on one’s ability to participate in research.

The ‘Resilience’ bit of TRIRPP takes a social justice approach to instilling resilience, adopting the approach developed here at the University of Brighton by Professor Angie Hart and colleagues in the Centre of Resilience for Social Justice Centre of Resilience for Social Justice (brighton.ac.uk). This approach to resilience recognises issues of structure, inequality and empowerment, arguing that a social justice approach to resilience must involve a transformation of the contexts in which adversity occurs.

One such context in which adversity may occur is the research context – adversity in day to day life makes participation difficult as the same barriers to accessing health and social care present. Why does this matter? Firstly there’s an ethical issue – if we do not directly attend to inequalities in ability to participate in research then we disenfranchise people from the right to participate in research. Secondly there’s a methodological issue – studies conducted only on the most enfranchised populations -the wealthy, white, educated members of society – carry huge bias.

A social justice approach to resilience means that one of the two key aims of TRIRPP is to improve access to research for disenfranchised individuals and communities, ensuring they are among the participants and that their experiences are also included when data yields evidence which in turn is used to shape interventions and services. Without deliberate steps to bring about this positive change we will continue to see what has been termed ‘intervention generated inequalities’ (IGIs) by researchers at the London School of Hygiene and Tropical Medicine (see Lorenc T, Petticrew M, Welch V, Tugwell P. What types of interventions generate inequalities? Evidence from systematic reviews. Journal of epidemiology and community health. 2013;67(2):190-3.)

Lorenc and colleagues describe how Intervention Generated Inequalities occur when research participants are drawn from the most enfranchised – how we unwittingly then develop interventions for the most enfranchised and in so doing so perpetuate or even worsen health inequalities. Designing studies to improve participation by disenfranchised groups is then a key principle of TRIRPP’s social justice approach to resilience; a principle which serves to both highlight this often-overlooked issue and to invite researchers to consider how their research designs might be improved in practice to achieve this aim.

 

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