Measuring Humanity in marginalised communities

A few years ago, I was asked by a health board to come up with a mechanism to capture seemingly unmeasurable aspects of the human experience.

The project, now known as Measuring Humanity, sought to co-produce a framework with marginalised community members and health practitioners that could systematically evaluate changes in ‘softer’ outcomes (such as trust) linked to health, wellbeing and inequalities. These aspects were to feed into more tangible ‘harder’ performance measures and targets saturating the health policy and practice landscape.

Our approach called for innovative methods of engagement and evidence gathering through whatever creative or relational form was deemed valid and appropriate for communities, be that hip-hop or theatre. 

Measuring what makes us human

Together, we endeavoured to measure health and inequalities through creativity and connectivity. And together, we stumbled into an evaluation stalemate with the very approaches we were critiquing.

Quantitative measures and targets, we claimed, over-simplify complex health issues and reduce individuals and communities to sometimes meaningless and misleading statistics. We challenged this dominant paradigm in public health evaluation and performance management and suggested a turn towards creative, relational, emotive, unmeasurable aspects of the human experience as crucial forms of evidence linked to health outcomes. 

But in our quest to (simply) measure (complex) person-centred and community or asset-based healthcare in a meaningful way, had we become less human? Had our efforts to objectify the subjective – to capture and categorise what could be defined as comparable moments of heartfelt emotion for measurement purposes – become similarly reductionist and simplistic? Was it appropriate to shoehorn two similar lived experiences into the same box?

Working with marginalised groups, we co-produced a flexible, community-led framework with humanistic indicators selected and defined by community members themselves. But did this process of simplification to fulfil standard public health measurement requirements dilute or dissolve nuances that were essential to understanding the complexity of communities’ experiences? 

Reflecting on experience

A community worker in a disadvantaged neighbourhood recently reflected on this paradox during a moving exchange with a community member and some of her peers. Tracey had overcome several challenges and experienced personal growth as she cared for her parent through their end of life process:

‘…It’s hard to articulate a story like Tracey’s without using poetry or something to capture the real depth of what that conversation was like… at the end of that conversation what you end up writing down in your notes is something like, “met Tracey, she answered this, this is the question she picked, and she has skills in…”, but the real power of that conversation is something I think you hold as a worker yourself… it’s hard to put that into a report… you can’t really capture the power of that moment because it’s so human. It’s just so fleeting. It’s just what happened with that group of four people…’

The power of this moment, which holds so many of the attributes that essentially make us human, doesn’t belong in a box or on a measurement scale. Even if you tried to contain (or constrain) it, Tracey’s conceptualisation of this measure could vary dramatically from her peers, or from one moment to the next.

In this instant, it could evoke happiness (a positive emotion that, if sustained, could help her live a longer and healthier life) as she reflects on quality time spent with a loved one. In the next, it could be re-traumatising and invite maladaptive coping mechanisms. Neither of these possibilities consider Tracey’s socioeconomic circumstances.

The transient nature of the human condition, often linked to one’s health and wellbeing, means that captured data has questionable validity. But does this make the data any less valid for Tracey? I’m reminded of a response from a researcher-practitioner in a ‘marginalised group’ when she heard Measuring Humanity was working with Audit Scotland (the country’s public service watchdog responsible for checking public money is spent efficiently and effectively) to ‘validate the feels’.

‘Why do my feelings need to be externally validated? I know they’re valid.’

She’s right. Though in an age of accountability, value for money and quality assurance, systematic measurement is the name of the game.

Embracing complexity

There are perils in attempting to measure the unmeasurable. As Toby Lowe puts it, there is ‘…reliance on a process of simplification and abstraction in measurement and attribution. These processes of simplification are required by OBPM [outcomes-based performance management] in order to try to fit the complexities of life into its models. However, these processes turn the management of social interventions into a game, the rules of which reward the production of data. Playing this game well can involve genuine service improvements, but frequently leads to gamesmanship – tactics which focus on means of data production which do not meet client need.’ He concludes that ‘we must change the nature of the game itself’, which Measuring Humanity strives to do.

Performance management, big data and aggregation moves public health further away from what makes us human. We need to embrace our complexities and vulnerabilities, be open to change and doing things differently, and ‘admit that we don’t have all the answers’.

We also need to radically shift our relationship with measurement and evidence, using them for honest learning and self-reflection rather than just proving we’re right, and demonstrating impact. Read more about the changing relationship with evidence in the Health Foundation’s latest publication, A recipe for action: using wider evidence for a healthier UK.

Dr Marisa de Andrade (@MeasureHumanity) is a Lecturer in Health, Science & Society and an Associate-Director for the Centre for Creative-Relational Inquiry at the School of Health in Social Science, Counselling, Psychotherapy and Applied Social Sciences, University of Edinburgh.