SARAH YARDLEY

Instead of trying to construct healthcare systems that don’t rely on people knowing each other, our energies would be better spent focused on creating mechanisms that facilitate relational working through equitable opportunities for people to connect with each other.

I wonder what your reaction to reading the above statement is? By people, I really do mean all people, regardless of role or position and so this includes patients, carers, professionals and anyone else involved.

Over the last three years I have been conducting ethnographic research in the NHS, with a focus on what happens when people need healthcare because of either serious physical illness requiring palliative care or serious mental illness requiring mental healthcare. The statement encapsulates the essence of my preliminary analysis.

I suspect it to provoke varied reactions, and am curious about how different people, in different roles, and with different experiences might react because it touches both on issues of being an insider researcher – I am also a doctor within the NHS – and broader social issues of equity, access and inclusion. Power, control, positioning of others and historicity (the baggage of evolution of systems over time, and the influences of prior experiences on people) continue to shape our healthcare systems because these systems are inherently social as well as structural; ultimately, people create and shape systems, however much we might, as individuals, prefer to think of ourselves as merely being subject to them.

Ben Fuchs, while working at the Kings Fund, defined rank as the ‘relative standing or position within the inter-related hierarchies of any system or society’ (Fuchs, 2021). Our inherently social systems confer relative advantages and disadvantages to people and groups depending on what rank, they are perceived to occupy, and this in turn creates variance in the current and potential social capital available to people in their current positions. That is, these dynamics shape not only what happens and is said, but also what there is potential to do or say for different people and groups. Further, it is not just the roles or identities conferred by societal norms that enhance or reduce their social capital. It is also their self-perception, and their perception of how others see them. Fuchs argues that rankism is the foundation of all isms, ‘an umbrella term for the many ways that people oppress others’ (Fuchs, 2021).

Undertaking my research involved working with people variously occupying the roles of patient/service user, “informal” carers (e.g. family/friends), and professional, in healthcare services from different disciplines and professional backgrounds. I am certain that my pre-existing capital, derived from both my ‘rank’ as a senior clinician, and my personal connections within the study fieldwork locations was critical to successful data generation in the context of a pandemic. This provided a foundation for building relationships in my research role, and being entrusted with the experiences of everyone who participated.

The historical under-resourcing of palliative care for people with progressive and potentially life-limiting physical illness and mental healthcare for people with serious mental illness in the NHS is well-documented. It is only in 2022 that there has been a legal obligation for palliative care to be commissioned (UK Parliament, 2022). Meanwhile, a quick glance through any news media dispels any questions about the under-resourcing of mental healthcare.

I chose to research these two fields because on paper provision is through very similar service models: in both cases with complex, often ambiguous layering of who does, what in what roles, when and why. The delivery of safe care is critically dependent on human interactions in both fields, yet attention to how safety should be meaningfully conceptualised as a result is lacking. This means that palliative care and mental healthcare for people with serious mental illness can be viewed as sentinel cases for understanding how to improve healthcare beyond addressing technico-clinical tasks.

To do this we need to first think differently about people in healthcare.

To seek to remove human connections (aka relationships) from processes of ‘how things get done’ does not inherently improve either process or outcomes. Treating healthcare as a series of mechanical transactions, independent of any human relationships, simply leads to superficial purported attempts at transparency.  Pretending that those with the most resources cannot simply work the system isn’t going to create change for those most marginalised and least included. 

Reclaiming relationships

Reclaiming relationships as a legitimate tool for improvement holds potential for valuable impacts if we can find ways to develop and share relational capital. To be clear, I do not have any desire to return to days of ‘old boys networks’ or any other exclusive grouping of power and capital. There is, however, little evidence to suggest the current system actually prevents nepotism effectively. It already does matter who you know in healthcare because it is this knowing that makes the difference between technico-clinical success defined in biomedical parameters and real world success.

At its most extreme the total disruption of relationship-networks might create a sort of dystopian equity where by the system is no good for anyone but this is hardly a helpful goal. The more complex challenge is to create a system that facilitates equitable access to relational working, care and approaches to all aspects of healthcare.

So the question is how do we make relational capital equitable? Paul Carlisle argues that in order to navigate the increasingly complex processes of knowledge transfer, translation and transformation in a system there are three sorts of boundaries that have to be crossed: syntactic, semantic and pragmatic. At a syntactic level a common lexicon is needed. This is necessary for information transfer through a common language but it is not sufficient to generate change. For this to happen shared meanings and understandings (semantic) need to be developed, so that shared practices (pragmatic) can follow. The latter will only be developed through experience of people working together, with commitment to resolving their different motivations and goals into a common aim (Carlisle, 2004).

Alongside my ‘official’ research work, conducted through a rigorous methodological approach,  I enjoy and find it helpful to engage in what might be best called the serendipity of curious lateral thinking and reading. During the last couple of months, two books have really illuminated my broader thinking when reflecting on my research findings:

The first of these, was The Dictionary of Lost Words, by Pip Williams. She describes her book as starting with two questions: “Do words mean different things to men and women? And if they do, it is possible that we have lost something in the process of defining them?”. Without wishing to spoil anyone’s read, it is a fictionalised account of the creation of the first Oxford English Dictionary, noted to be a “flawed and gendered text” while still being “extraordinary, and far less flawed and gendered that it might have been in the hands of someone other than James Murray”. Williams succeeds in her goal of challenging the reader to consider “how the way we define language, might define us” and critically evaluating how words might effect our lives, and how both people and languages are still works in progress (Williams, 2020).

The second,  was Radical Help: How we can remake the relationships between us and revolutionise the welfare state by Hilary Cottam (2018). I’ll be honest, this book produced mixed feelings in me. Excitement – someone has fluently and coherently articulated the importance of relational working and relational care much better than I think I can. Resonance – this is what I’m finding too in my research, and I want to do justice to the people who participated, representing their voices well, particularly when they were telling me, you can say this for us, we can’t say it ourselves to ‘the system’. Sadness – how much evidence will be needed to actually bring about radical change in our systems? And a very large dollop of humility and admiration – how on earth did she manage to get to do what she did? Cottam is very clear about the challenges, and failures she and her team experienced when attempting to get those embedded in established structures to change, and provides useful insights as to why this might be. They are not, after all, bad people. Her work suggests that that a crisis was commonly needed to shift from system norms of a transactional approach to being willing to try relational working. Threats to this shift came from retention, or reassertion, of a mentality that sought to fix and manage needs rather than grow capabilities, contain risk rather than create possibility, offer targeted services with stringent eligibility rather than needs-based offers and the desire to audit money rather than connect multiple forms of resource.

In my research it is clear that trust can be built through relationships, especially if everyone is willing accept some vulnerability. Yet, in my study people described the NHS as a system where they were pushed to make sure ‘nothing went wrong’ at the expense of focusing any energy on doing things right. Experiences of a healthcare system that unrealistically uses safety language to promise ‘fail safe’ healthcare rather than tailoring of care in the face of complex uncertainties are problematic whether you are on the professional or the patient/carer side of the equation. Structural solutions that try to close in any parameters for judgement, only create an illusion of mitigating risk through ‘control’ while making everyone feel vulnerable to the system, hindering the growth of relational working with each other.

People in my study, regardless of role were suspicious of a system with ‘sloping shoulders’ that choses to turn a blind eye to the impossibilities of not taking risks in real world practices, while transferring the responsibility for any adverse outcomes, regardless of how careful and thoughtful the decision-making was to individuals. Institutional emphasis on measuring transactions and tasks, and imposing structural solutions that didn’t address real world conditions not only hindered people but created a vicious cycle: no one want to take the risk of sharing the workarounds developed in the messiness of work because they anticipated this to result in further attempts to control rather than understand.

Healthcare’s raison d’être must be to improve people’s lives. If we really want to think in in theoretically and empirically rigorous ways about whole systems when seeking to understand and improve healthcare – in general, or with respect to specific issues of equality, diversity and inclusion, then our model needs to be one of a complex, evolutionary, ecological system that recognises the sociocultural influences inherent to the human condition. On any given instance it is always easier to perpetuate the system than to demand change yet working with dissonance and engaging in ad hoc workarounds can be exhausting as well as creating further risk as a result of moral injury. Ultimately, ‘Meta-cognition, emotional intelligence, and informal learning will either overcome system limitations or overwhelm system safeguards.’ (Dinnen et al, 2022)

Really understanding how work gets done in real life – norms, routines, roles and responsibilities, dynamics of power – is essential for improvement. Searching for a perfect stable model is to chase a myth.  Resource might be better expended on enabling and supporting locally situated work and skills. What would a system where patients, carers and professionals were trusted to make collective, thoughtful and personalised choices, developing creative solutions when needed actually look like?

Before I end I’d like to note some of the debates that come up in both academic and clinical conversations about ethnography. The next blog contributor, Gemma Hughes, has more to say about this, so I will limit myself to two observations.

First, ask people to stop and consider how much they are actually influenced by stories in their lives, and why that might be. Stories are a core human expression of sense-making – how we move from syntax to semantics influencing our approach to pragmatic boundary crossing. People act towards things on the basis of the meaning those things have for them; they derive meanings from social interactions, modified through interpretation.

Second, the use of theoretical lenses to make the familiar unfamiliar, and a reflexive critical approach to ethnographic data questioning norms is essential to improvements in what often matters most in healthcare, but is impossible to quantify, such as relationships and human connection in the face of adversity. We all want, and should expect technico-clinical competence but this will never be enough. Through ethnographic research we can choose to pursue a course of turning up the volume on what matters most in healthcare by supporting or representing the voices of those who, for a variety of reasons, do not feel able to speak for themselves and define a future research agenda for working with the important, yet intangible, to find new solutions for working with, rather than seeking to regulate against liminality.

The recently updated guidance research of complex interventions from the Medical Research Council and National Institute of Healthcare Research offers an opportunity as it brings recognition that defining what ‘works’ may usefully go beyond looking at efficacy and effectiveness to integrate theory-based and/or systems perspectives on other impact, value for resource input, theorising how it works, interactions with context, contribution to systems change, and how evidence can be used to support real world decision-making. Furthermore, the guidance emphasises that answering questions most useful to decision-makers rather than those that can be answered with greater certainty may make research that seeks more uncertain answers to broader complex questions a greater priority.

And so to finish, what do you really think of my opening statement? There is a bit of me that worries about it on two counts. First, perhaps this is not news, just depressingly unrealised and second, what will it take to really shift approaches to ‘healthcare improvement’ and whole system design?

References

Fuchs, Ben. Rank & Rankism, Kings Fund. Oct 2021 (oral presentation, personal communication).

UK Parliament, Health and Social Care Act 2022. Available at: https://bills.parliament.uk/bills/3022/stages/16122/amendments/91465#:~:text=This%20amendment%20would%20specifically%20require,for%20whom%20they%20have%20responsibility [Accessed 02.11.22]

Carlile, Paul.R. Transferring, translating and transforming: An integrative framework for managing knowledge across boundaries. Organization Science 2004: 15 p 499-616 https://doi.org/10.1287/orsc.1040.0094

Williams, Pip. The Dictionary of Lost Words. New York: Ballentine Books, 2020.

Cottam, Hilary. Radical Help: How We Can Remake the Relationships Between Us and Revolutionise the Welfare State. United Kingdom: Little, Brown Book Group, 2018. https://www.hilarycottam.com/radical-help/

Dinnen Toby, Williams Huw, Yardley Sarah, et al. Patient safety incidents in advance care planning for serious illness: a mixed-methods analysis BMJ Supportive & Palliative Care 2022;12:e403-e410. https://spcare.bmj.com/content/12/e3/e403

Skivington Kathryn, Matthews Lynsay, Simpson Sharon-Anne, Craig Peter, Baird Janis, Blazeby Jane M, et al. Framework for the development and evaluation of complex interventions: gap analysis, workshop and consultation-informed update. Health Technol Assess 2021;25:57 https://www.journalslibrary.nihr.ac.uk/hta/hta25570/#/abstract

Sarah is an Associate Professor of Palliative Medicine in the Marie Curie Palliative Research Department, UCL. This blog relates to her work as a post-doctoral fellow with the THIS Institute. sarah.yardley@ucl.ac.uk