by Es Will
Contents
The high-level perspective of those responsible for a clinical specialty like Renal Medicine can be considered as analogous to that of the government of a state.1,2 Examining the properties of such ‘seeing’ throws up several core features. Description and Prescription expose and come to define the standardised, repeated elements that simplify any moulding towards general ideals and improvement in a population or profession. The profile of a culture allows ‘legibility’ as opposed to residual illegible components, both in a state population and, say, in a professional group.
The illegibles provide scope to compensate for narrow or ineffective prescriptions, allowing a modified acceptance of imposed routines. They exist because of serial prior needs to accommodate unique problems and apply practical, sustainable solutions. There is reason to discuss how an aggregation of renal units adjusted and improved the initial prescription of audit cycle performance by the Renal Association (RA).
It became apparent as it developed that there were two major strands to the UK Renal Registry (UKRR) descriptive exercise after 1995. They reflected the sustained interest of particular nephrologists and UKRR officers in either Epidemiology and/or Quality Assurance/Clinical Development (QA/CD). Both strands served research interests and inevitably interacted, although the implications of the two was scarcely remarked at the time.
The subsequent characterisation of national renal replacement treatment extended the surveys reported in 1990 and confirmed details of gender, social status, disease profiles and, to some extent, co-morbidity. These were the products that requited the capitation funding of the UKRR reporting system by the NHS. Epidemiology provided the lion’s share of early UKRR publications, successfully attracting external academic expertise.
The QA/CD was encouraged and informed by the gift of readily available laboratory data. A progressive increment in dialysis dosing (Urea Reduction Ratio [URR]) and in Haemoglobin values became evident in the first decade. Those trajectories were informed by serial Rose-Day plotting of necessary practical outcomes, which were based on centrally generated RA standards/guidelines.3 Other early insights came from work on the standardisation of laboratory methods and the recognition of pitfalls in clinical behaviour, such as blood pressure reporting and post-dialysis blood sampling. The need to come to terms with the inevitable outcome distributions of interval results was variably interpreted and seems to have been misconstrued – for example, as deliberate rather than inevitable.4
The strands of the UKRR descriptive initiative were paired with the RA project to declare treatment standards in renal replacement, several versions of which were developed across the mid-1990s by RA and related medical specialty nominees. Starting just from an account of what was seen as best practice they were subsequently more extensively referenced and broadened.5-7 They represented the RA prescriptive element of EBM, ultimately adopting the rubric of Treatment Guidelines. They were not limited to advising clinical aspirations, but also detailed the desirable clinical data collections for CQI audit.
Although there were efforts to examine the consequences of a developing audit culture and consider the structures that might monitor it, there seems to have been no appetite for any national professional mechanisms to close the unit audit loops.8 That was despite an explicit description in Registry Reports, including notice in advance of the post-millennial National Service Framework (NSF) IT initiative.9 Instead, units were expected to make use of registry data for local consumption; this laissez-faire was the prescription of a national default in the audit cycle to unit level. It represented an optimistic, unit-based standardisation of audit.
The acceptance of unit identification in UKRR reports was as far as any national perspective and unit exposure was pursued, seen as brave at the time. The use of descriptive material in the service of high-level prescriptions and clinical progress was obscured inevitably by the unit parochialism. Of course, managing the scale of a national feedback mechanism would have been gargantuan and intimidating, as well as more unit-exposing. A respect for unpredictable clinical and operational contingencies characterised the RA prescription; for example, presenting the details of mortality were hotly debated.
The UKRR was not mandated by the Renal Association to develop a research programme based on the aggregated data it presented. Chapters of the early Reports were written by enthusiastic co-opted colleagues, in a spirit of exploration, ballasted by registry officers responsible for the NHS feedback epidemiology. The QA/CD chapters explored a variety of approaches to the material, ranging from local to international comparisons, reviewing the recent scientific literature, commenting on unexpected results and flagging problems with data acquisition and technical validity. The registry provided Rose-Day plots as a guide to the necessary unit performance for several variables, which became less informative as results improved. Digit bias and rounding of raw data were also explored. There was some feeling of an obligation by the UKRR to point out annual changes, to give a perspective on the development of the specialty in the UK.3 National summaries in the Annual Reports could not but stop short of prescription, as closure of an audit cycle. An annual national special interest meeting was instituted to inform registry aspirations and practicalities, which hinted at the incomplete mandate. That meeting allowed some reporting of limited audit results informed by UKRR-presented data.
UKRR data presentation was geared periodically to answer more widely prevailing specialty questions and out of that came findings that ultimately became substrates for research. That stream has subsequently achieved a routine basis, still biased towards academic epidemiology and specialised nephrological interest.
Overall, the laboratory data provided disappointingly little that was new in recommended blood results nor prompted research study. Even the unit-sustained asymmetry of ESA doses in the adequate treatment of renal anaemia was never taken up as a national research topic.
The UK interest in risk profiles derived from early US reports of mortality linked to Serum Albumin levels, and the prognostic relevance of calculated dialysis dose, proved to be limited. Indeed, oversimple conclusions haunted clinical interpretations, and the deliberate fashioning of whole unit results was found onerous or undesirable. In fact, Haemoglobin guideline values went through a complete circle in setting plausible treatment goals over a decade or more (achieved values were never correlated with clinical outcomes, only qualitative reports of patient experience). Other recorded laboratory values became largely irrelevant in the longer term. It is of interest that other national systems were more circumspect in their ambitions for laboratory data.3
There was periodic solicitation from the UKRR for research ideas and usage of the database. The annual meeting allowed the rehearsal of current queries and position statements. However, such engagement was not as lively as the officers would have liked and few QI/CD publications were forthcoming for over a decade, as the registry modus operandi was established.4 There was essentially a loose ‘special interest’ group of enthusiastic colleagues, who populated the UKRR management committee and attended the annual discussions. The degree of buy-in from the RA constituency was manifested in that, and limited.
At ‘state’ level, the prescription elements of the central ‘seeing’ perspective were always paralleled by surviving local components of organisation and adaptation, which could be seen as rescuing the impractical elements of grand schemes through energy and ‘nous’. (Scott uses the Αncient Greek metis as ‘practical experience’ or ‘knack’, derived from the ‘wisdom and cunning’ of the first wife of Zeus).10 This twin dimension is exposed by any effort at a ‘work to rule’ and emphasises the contribution of improvisation and personal skills. The timely, practical capacities of local expertise were critical, if illegible.
Organisations like the NHS are often described as ‘working’ despite rather than because of central decisions and attempts at control, through those contributing at the point of necessary clinical activity. The mobilisation of personal contact, interests and metis has been seen as highly relevant to group activity, the Dunbar number of effective social interaction being a case in point.11 As it happened, the typical UK renal unit size fitted his scales of close personal contact quite well, varying around 150 patients in total.
The development of renal clinical IT in the 1980s had largely involved regional units and it was these who were employed in the first UKRR exercises of data collection and presentation as proof of principle.3 The major cities made some efforts at their own clinical IT and were slower to engage with national audit by data returns to the UKRR. Indeed, the London units developed their own audit infrastructure, resulting ultimately in the Pan Thames Renal Audit Group as a precursor to the London Kidney Network.12 It is interesting to consider how much this represented an intuitive scale of interpersonal ideation and contribution, rather than assuming a late reaction to professional specialty leadership being perceived as usurped by ‘the regions’. The scale of interaction was congruent ultimately with NHS organisational and funding preferences.13
What scale of unit aggregation is it then, that allows colleagues to ‘get their head around’ a certain mass of data and work creatively with it? That question bears also on the costly infrastructure required to make any collaboration productive and sustained. Whilst the UKRR of six dozen units offered a national picture, it was not necessarily the agency that could convert the available data into useful information most effectively. The explanations of not just the What, but also the Why and How, were at unit level and arguably needed local unit aggregation, knowledge and research to be mobilised. What is more, the early disaggregation of reporting to the individual unit level, the intuition of the RA, however much it allowed local independence, deprived colleagues of the richness of group support and experience; it was also cost ineffective.
From these considerations we can infer an intuitive specialty search for a scale of collaboration that could allow the expression of productive, rewarding, individual clinical contributions and justify a sustainable supporting infrastructure. The subsequent renal networks would seem to be something like that scale. It appears that the original, prescriptive, O’Donoghue/Manchester solution of ‘networking’, rather than ‘hub and spoke’, was taken up creatively in Pan Thames and demonstrated a scale of effective professional organisation. Essentially, the parochially illegible resources came to rescue an over-granular RA delegation to each unit.
These dispositions are consistent with the Scott analysis of parallel contributions, legible and illegible, to effectiveness, although they have been quite legible in a voluntary professional milieu.1 There seems to have been a felicitous conjunction of the prescriptive and residual professional collaborations on a scale that satisfied both administrative and professional purposes, to make them ‘work’.13
There is a priori evidence to encourage examination of renal specialty development at the end of the 20th century through analogy with description and prescription in the historical attempts to create nation states. In the latter, traditional local complexities defied description enough to allow parallel cultures and tacit resistance to any imposed change. The greatest starting disparity in such an analogy is in the voluntary nature of the medical community, as against the vulnerable populations of less coherent societies. Indeed, local renal unit independence was preserved and facilitated in the default RA national medical audit model, as evidence of its support of professional prerogatives, in a culture prescribed by itself!
The national, unit-based, dispersal of responsibility by the RA, for the audit follow up of UKRR presented data especially for QA/CD, preserved unit independence but created obscurity at the heart of the specialty.
National reporting of the epidemiology of renal replacement through UKRR was productive of specialty coherence but quality assurance and clinical development could only be given as a reported, delayed status quo, carrying little explanatory potential to inform audit completion. However, the voluntary dimension of clinical responsibility seems to have come through in specialty prompts to seek more comprehensive case detail through local interest and expertise; the basis of evolving a suitable, pragmatic scale of aggregated units and infrastructure. That network solution ultimately brought local expertise to bear for QA/CD and research as well as offering a workable scale of administrative organisation to the NHS. Scott’s embedded, traditional illegibilities were able to become legible in voluntary, network, liaisons. They fused with the legible organisational prescriptions of the RA and NHS, which could be more willingly accommodated by the local professional cultures.
Last Updated on May 16, 2026 by John Feehally