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, imposed or historical, allows ‘legibility’ as opposed to residual ‘illegible’ components, both in the population of a state and, say, in a professional group.
The illegibles provide scope to compensate for narrow prescriptions, allowing an acceptance of imposed routines. They also offer a means of tacit resistance to imposition, when a prescription is an unwelcome nuisance or experienced as coercive. That possibility is apparent when reviewing the limited performance of renal unit data returns to the UK Renal Registry (UKRR) in its formative years.
Since no systematic ethnography of the UK units was ever attempted, it is of interest to seek evidence of the reaction of clinicians to the irresistible, albeit professionally plausible, pressures on their established cultural habits.3 Whilst the clinical provision of renal replacement, and specialty support to general medicine, were legible, there were illegible activities, from responses to a wide variety of intractable, local historical, problems and the topics of career interest to individual clinicians. The former were managed by improvisation and idiosyncrasy, which could be said to mimic the social complexities that could be the basis of population resistance to state-generated change.
The uncovering of some resistance to central initiatives by the units, through persistent cultural illegibilities, would not be surprising. Not every member/subject of the Renal Association (RA) would have welcomed the annual task of scrupulously compiling information about their unit for a third party. Not every nephrologist will have been enthused by the conventional performance of audit cycles. If such resistance had existed, its form would need to have been tacit rather than explicit, to sustain the specialty social milieu.
The new dimension of describing the specialty, represented by UKRR, did not extend to a review of the challenges facing each renal unit when attempting a data return. Like radical state philosophies, the task was assumed to be deliverable, even by the RA/UKRR as prescribers to a voluntary system. The wide range of UK unit size, with corresponding demands on facilities and staffing, was a scarcely recognised factor in complying with the specialty intentions. No index for the unit capacities for data returns was formulated.
Assembling data for transfer to the UKRR required active unit participation in organising and transmitting regular data reports through clinical IT. Clinical collaboration was essential for the quality and provision of data presented through the Registry, its accuracy and completeness. There was no model of data compilation at unit level in the renal clinical IT inherited from the 1980s (except possibly laboratory data downloading).4
The necessary IT-based effort and staffing was not funded for unit level processes. The ultimately negotiated national capitation fees accrued to the RA, as needed to run the registry. The lack of funded, uniform unit IT infrastructure created a plausible candidate for expressing reluctance or resistance to the sheer effort and nuisance of UKRR participation. That is, the data returns to UKRR could be persistently incomplete and/or erroneous as an incidental, understandable, default; their correction was not inevitable at unit level nor supervised externally. The professional assumptions of willingness, competence, reputation and etiquette, were based on the social coherence of the specialty. They offered a potential disguise of partial or complete disaffection with central policy, not dissimilar to a resistance to political change in the populations of nation states being transformed.
In fact, there was abundant evidence of sustained incomplete and erroneous data transfer from units to UKRR, evoking periodic feedback exhortations for improvement. The inconsistencies necessitated an investment of time and effort in data validation by the UKRR.
There were a handful of explanations for the unreliability of unit returns.
The main unexpressed explanation of persistent inconsistency was of inadvertent practical breakdowns in the performance of local data registration. The theoretical weakness of everyday clinical recording as a reliable and sustainable source for providing audit /research data was understood, if not calibrated. The example of the rounding of blood pressure values in the transfer from dialysis machine-side measurement to entry on a unit database was a clear example.5
Whilst contingent local difficulties were plausible, they would seem to be more likely if the scale and distribution of data harvesting was at the margin of reasonable possibility, given the considerable size and complexity of some UK units. The lack of an index of the challenge to each unit made that illegibility inevitable.
The harder conclusion, of persistent, unremedied, inadequate systems of data acquisition at unit level, and the reasons for them, was deeply implicit. Professionals could be kind to one another (their kith) by blaming contingencies, which were credible particularly in the large English units.
There were sometimes obvious gaps in the initial software of the unit computer databases that added to the incompleteness. It was observed that the 1990s UKRR-foundation software of data return from each unit was rarely refashioned; database elements that were imperfect or missing tended to persist. Essentially, since systems produce what they are designed for or become, an imperfect performance should have always suggested systems that required active modification to perform with less error.
Again, such explanations are all the more plausible if the reporting itself was perceived locally as a nuisance or imposition. Any resistance/tacit complaint might have been conscious or not. There was no shortage of unit illegibilities to provide cover.
The complex predicament at unit level was explored and described in detail through a comprehensive Welsh initiative in collaboration with UKRR, published in the Eighth UKRR Annual Report (2005).6 Registry methodologies in data validation were carefully described earlier and later. 7,8
In fact, it could be shown that it was possible to be both complete and accurate in most data fields, especially in the smaller units of Wales and Northern Ireland. The challenge in reporting on the typically large populations of English units, with multiple treatment sites, could be imagined but was not pursued in detail in the light of the Welsh findings.6
On reflection, the challenge of data compilation was manageable for the founding units of the UKRR, not only by virtue of individual enthusiasm but also as a matter of incidental unit scale and IT capacity. That was the unremarked facilitation of the entire exercise, a good example of the neglect of critical contingencies at the time, and by subsequent histories. The assumption that units of any size and topography could, rather than would, manage adequate data collection was made without serious consideration.
The post-millennial senior staff expansion, with multiple consultant supervision and lack of continuity, posed that question more keenly. Certainly, any convincing uniformity of patient management in RCTs was threatened by that as well. As a personal aside, it resulted in my withdrawal from both single centre studies and from a personal shepherding of the unit clinical database after over a decade at Leeds, St James’s.
As an overall consequence, the national aggregation of the UKRR registered material could present only an interval, quarterly or annual, description and national status, but never achieved any compelling explanation of results.9 Crucially, drug information and doses of ESA, for example, were either unavailable or patchy.
Just how far the persistently incomplete and erroneous data returns from individual units were related to disaffection or frustration with the prescribed RA audit system remains to be seen. There were other systemic concerns for clinicians, for example the risk of micro-management of treatment by the NHS (rehearsed in the USA for ESA dosing) and the unresolved conflict of group with individual patient management, which has bedevilled the maturation of EBM and CQI in the clinic. In any event, reporting systems were not always amended effectively, for whatever reasons.
A parallel basis of dissatisfaction might also be posited for the continuous complaints of untimeliness and delay in the annual UKRR Reports, especially since no units seemed to have projects critically dependent on the timing of reliable data re-presentation. The large UK unit patient populations demonstrated only slow changes in, for example, three monthly group data. The complaints became ‘a tail that wagged the dog’, causing reputational damage to the Registry exercise and diverted UKRR personnel to efforts in data hygiene over many years. Delayed reporting was another plausible reason for unit under-performance but was caused in part because of it!
It is worth considering that non-compliance/dissatisfaction with central prescription is a personal/group defence against institutional neurosis and ultimate professional apathy, a risk described by Scott. Submission to sustained coercion can be a logical reaction but has a price. No action is without a positive side, even when negative and reactive! The contemporary NHS may be a case example, as it becomes more demanding and controlling in the cause of optimising ‘productivity’ for the national healthcare investment. Sustaining professional personal agency and contribution, as an operational gift to the Service, is readily disregarded by an anxious prescribing authority and vulnerable to clumsy prescription. The impoverishment of individual motivation is a hazard in both voluntary and vulnerable populations.
The exposure of complex illegibilities in professional activity at renal unit level offer an understanding of persistent poor compliance with data returns to the early UKRR. The assumption of universal enthusiasm for clinical IT and audit was probably a faux legibility born of wishful thinking. Failures ascribed to incomplete software and contingent reporting difficulties were arguably too kind to kith, one of the pitfalls in both owning and being the beneficiary/participant of a prescriber like the RA. The hard conclusion, of inadequately corrected IT and staff provision, was largely withheld within the specialty. The significance of the demonstrated possibilities of complete, accurate returns from smaller patient populations were not fully appreciated, but then there was an assumption that they were possible regardless of unit scale and organisation. The adequate compilation of detailed registry descriptions may be an unrecognised prompt for the functional division of the large UK unit entities to make it possible, just as unit patient and staff growth can provoke a division into teams. The absence of any index of difficulty meant that stimulus was not explicit.
The gaps in the reported data of clinical management were a disincentive to pursue more complete coverage of medication, for example. That left the annual UKRR Reports able to provide a snapshot of national renal activity, but with only modest explanatory potential. The presentation of a regular national ‘situational awareness’ of renal replacement was enough to satisfy the registry effort of the time. However, the prescribed mechanisms for closing audit cycles and promoting practical improvement were left incomplete.
Last Updated on May 16, 2026 by John Feehally