A report by University College London on the summary care record scheme is expected to be published on Thursday.
Today this blog publishes highlights from a draft of the UCL SCR report.
It’ll be interesting to compare the draft and final reports to see whether the Department of Health has softened any of the already-nuanced messages in the draft report.
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In 2006 draft reports of the National Audit Office on the NPfIT went on a journey from criticism to praise. They went through a “clearance” process in which the Department of Health recommended many changes and PR-related additions before final publication.
University College London’s final report on the SCR was ready in April 2010 but Labour ministers, the Department of Health and NHS Connecting for Health were reluctant to publish it in the run up to the general election.
The then NPfIT minister Mike O’Brien told the Tory health spokesman Stephen O’Brien in April 2010 that the latest UCL SCR report wouldn’t be published until later this year.
At the time the Department of Health denigrated the basis of the research – even though the evaluation was commissioned by NHS Connecting for Health at a cost to the taxpayer of £723,400.
In answer to my questions, this is how a Department of Health spokesperson denigrated the draft UCL report.
“This is a draft report based on a small sample of information. It is currently being reviewed for inaccuracies by academics and other contributors.”
Was it really such a small sample of information? Two years work went into the UCL SCR evaluation which involved:
– Evaluating a national quantitative dataset on SCR uploads, accesses and HealthSpace registrations provided by CFH
– Evaluating a dataset of 325,321 anonymised encounters in participating primary care centres provided by Adastra (software supplier)
– In-depth qualitative studies of 237 encounters between patients and doctors, nurses, pharmacists and call handlers in unscheduled care settings
– Interviews with about 140 individuals from CFH, NHS organisations, IT suppliers, professional bodies and patient organisations
– Studies of 20 people living with long-term conditions (5 of whom had tried to use HealthSpace) and interviews with 15 patients and carers who had used HealthSpace Communicator to email their GP practice
– Documentary evidence such as policies, business plans, minutes of meetings, internal reports, action plans, communications and media coverage
– Field notes from direct observation at meetings and events
– Verbal and written feedback from important stakeholders
Below is a summary of the draft UCL’s SCR report.
THE DEVIL’S IN THE DETAIL
Final report of the independent evaluation of the Summary Care Record and Healthspace programmes.
The Government’s policy documents published in 2005/8 anticipated a number of benefits of the SCR, which were:
i) Better care – the SCR would improve clinical decision-making
ii) Safer care – the SCR would reduce the risk of harm, particularly medication errors
iii) More efficient care – the SCR would speed up consultations between doctors and patients
iv) Reduce the need for onward referrals – the SCR would avoid A&E visits, hospital admissions and unnecessary call-outs of ambulances
v) More satisfied patients – because people would be able to state their care preferences, receive better care and access their health record via Healthspace.
The UCL draft report concludes:
“Overall the evidence that the SCR programme had so far achieved the benefits set out was limited.”
i) There was evidence of improved quality in some consultations, particularly those which involved medication decisions
ii) There was no direct evidence of safer care but findings were consistent with the conclusion that the SCR may reduce rare but important medication errors
iii) There was no consistent evidence that the SCR made consultations quicker
iv) There was evidence that the SCR was particularly useful in patients unable to communicate or advocate for themselves
v) There was no evidence of a reduction in onward referral
vi) The impact of the SCR on the satisfaction of patients was impossible to assess.
i) There was no evidence to date of improved personalisation of care
ii) There was no evidence to date of increased patient empowerment or increased ability to manage long term conditions
iii) There was no evidence to date of improved accountability, quality improvement or safety as a result of patient input to the data quality process
iv) There was no evidence to date of reduced NHS costs
v) There was no evidence to date of improved health literacy in patients as a result of using Healthspace
The UCL report reveals hidden flaws in the NPfIT SCR programme:
Costly changes to contracts needed
“Some costly changes to contracts with IT suppliers were necessary to incorporate requirements that had not been fully anticipated at the outset of the programme.”
Original specification paid too little attention to front-line users
Some staff working for the SCR supplier BT said that not enough attention was paid to frontline users when the original specification was set. “British Telecom who produced and maintained the Spine under contract to CFH, considered this contract to be high-risk. Some BT staff felt that the original specification had been set in board-level meetings where insufficient attention had been paid to the perspective of front-line users.”
Deadlines set for technical solutions were unrealistic andpolitically-driven
Small IT suppliers tended to have a close and responsive (‘agile’) relationship with their customers and a good understanding of the ‘workaday world’ into which their products were being introduced. Some felt that CFH staff did not fully understand clinical work in primary and unscheduled care and that deadlines set for delivery of technical solutions were unrealistic and politically driven.
Some SHA staff felt that CfH information was not being shared
There was a perceived lack of clarity on the division of responsibility between national and local parts of the programme and a feeling by some senior SHA staff that information held centrally by CFH (for example in relation to delays with software suppliers) was not being shared;
Main findings: summary
“When we began this phase of the evaluation in May 08, four primary care trusts (PCTs) were actively involved in the SCR programme. About 150,000 SCRs had been created; 600,000 patients had been sent a letter informing them of the SCR programme, and 0.81% had formally opted out.
“About half these patients had also been informed of HealthSpace. Around 200 patients had completed registration for an advanced HealthSpace account through which they could access their SCR.
“As of 1st March 2010, 50 of 152 PCTs in England had begun to write to patients and 16 had begun to create SCRs. 8,853,358 people had been mailed about the SCR and 14,505 (0.65%) had opted out. 201 GP practices had ‘gone live’ (uploaded patient data to create SCRs). 1,243,911 SCRs existed and 14,266 had been accessed. 25 settings had achieved ‘technical go-live’ (i.e. had all technical links in
place to use SCRs in clinical care).
“In settings using the Adastra interface (GP out of hours and walk-in centres), SCRs were being accessed in approximately 4% of encounters but SCR accesses varied considerably depending on the setting, type of clinician, experience of clinician, nature of encounter and time of day.
“Fewer than 20 SCRs per week were being accessed in secondary care settings across the country.
“Fourteen PCTs were participating in the HealthSpace programme but activity in most of these was described as at an early stage. 110,000 people had opened a basic HealthSpace account and 2219 had activated an advanced HealthSpace account…
Some main findings: NHS organisations, during the period May 2008 to February 2010
“… CFH’s expectation that SHAs could control and monitor the performance of PCTs in ‘deploying’ the SCR was perceived to be unrealistic. Local managers were surprised at the immaturity of the technologies and business processes at the outset of the national roll-out and some felt underconfident to take this complex programme of work forward;
“Delays in provision of technical solutions from GPSoC suppliers led to slippage in go-live dates for GP practices and a concomitant loss of local morale and motivation.
“Over 40% of all GP practices were using a system that was compliant in theory with SCR systems but which encountered significant ‘bugs’ when go-lives were attempted, necessitating manual workarounds for what was intended to be an automated upload.
“A further 15% of GP practices (over 30% in some PCTs) were using systems that were unlikely ever to be compliant with the SCR
“The programmes were associated with unanticipated administrative workload, for example in relation to information governance measures to process and police secure access to the Spine (e.g. issuing smart cards for a highly mobile group of junior clinicians), investigate unauthorised accesses to the SCR (via a system of role based access controls, technical alerts and paper reports) and respond to
” Local Clinical Leads (12 sessional GPs and one nurse), overseen and supported by the National Clinical Directorate, attempted to engage their fellow clinicians and troubleshoot local issues, with differing success in different localities.”
Main findings: use and non-use of the SCR at the clinical front line
“In relation to use of the SCR by clinicians in unscheduled care settings:
“We observed cases in which the SCR appeared to add value in the primary care consultation, especially when patients had been prescribed multiple medications and were unsure what these were.
“We also observed many cases in which the SCR was not available but might have added value had it contained the data needed for a key clinical decision;
“We observed few if any cases in which the presence of the SCR made care safer, or where the absence of the SCR appeared to make care unsafe. This seemed to be because doctors, nurses and pharmacists tended to err on the side of caution. They took additional safety measures if key data were not available and they referred many patients on to the next step in the system ‘just in case’ whether SCR-held data were available to them or not;
“When dealing with complex cases, health professionals sometimes found it stressful and challenging to make decisions in the absence of reliable data on medication and allergies. In such circumstances, the clinician expressed more confidence in their decision and described the consultation as “easier” when the SCR was available, even when the information on it did not change that decision;
“Analysis of a large quantitative dataset of clinical encounters in out of hours settings showed that use of the SCR was significantly more common amongst experienced regular clinicians than occasional staff, in marker conditions where a drug or allergy history was likely to be important, and in cases where the patient had more than one diagnosis. SCRs were less likely to be accessed in the elderly and in the early hours of the morning. However, most of the variation in SCR use remained unexplained even when these and other demographic and diagnostic variables were taken into account. There was no consistent association between use of the SCR and consultation length;
“Qualitative data suggested that where the information held on the SCR was poorly matched with the scope of practice of the clinician (e.g. when a complex medication list was viewed by a nurse without senior-level prescribing training), the SCR appeared to reduce rather than increase clinician confidence and increase rather than reduce consultation length;
“We encountered no examples of the SCR leading to a change in onward referral within the local health community, nor of a patient without a SCR whose onward referral decision was likely to have been different had a SCR been present;
“We found it impossible to assess whether patients were more satisfied as a result of their SCR being present because satisfaction was a function of the consultation as a whole, not of the presence or absence of the SCR.
“Thus, in contrast to the expectations expressed by many stakeholders that the SCR would bring clear, easily defined and readily measurable benefits, we found that when benefits occurred, they were subtle, hard to articulate and difficult to isolate out from other aspects of the consultation. However, because it is rare for patients to encounter serious harm (e.g. from medication errors) in the primary care setting and the SCR was little used in any other setting, our findings do not exclude a significant positive impact of the SCR on patient safety.
“We encountered examples of incomplete and inaccurate data on the SCR. In particular, we observed cases in which:
“The patient was taking medication which was not listed on the SCR (e.g. obtained from pharmacies, unscheduled care settings, the private sector, a relative’s medication, a stockpiled supply of past drugs, or abroad)
“The SCR listed ‘current’ medication which the patient was not taking
“The SCR indicated allergies or adverse reactions which thepatient did not have
“The SCR failed to indicate allergies or adverse reactions which the patient did have.
“Clinicians working in unscheduled care drew eclectically on multiple sources of data – including the patient, electronic and paper records, and their own observations and measurements. When these sources conflicted, they made a contextualised judgment about two things: (a) which data source was most likely to be ‘true’ and (b) the level of residual uncertainty in the case. We did not see any cases where incomplete or inaccurate data on the SCR led to harm or the risk of harm to the patient – precisely because clinicians did not view the SCR as a ‘single source of truth’.
“When the SCR was not accessed in an unscheduled care consultation, the reasons were often multiple and complex, and included both social and technical factors.
Examples of reasons for the SCR not being available or accessed included:
– Information held on the SCR was irrelevant to the encounter (most commonly because the patient had a very minor illness and/or sought something other than a clinical decision e.g. reassurance, certification), so the clinician did not check if one was available or not;
– Information held on the SCR was reliably provided by some other source (most commonly the patient or carer)
– The patient did not have a SCR (most commonly because they were registered with a GP practice which was not participating or had yet to go live);
– The patient’s SCR was not available for technical reasons (e.g. temporary loss of N3 connection, lack of access to a computer terminal)
– The patient’s SCR was not available for human reasons such as patient not identified on Spine; SCR use not compatible with organisational routines and micro-practices; staff member not trained, not issued with smart card, not authorised, not motivated, not encouraged or supported by seniors or overly concerned about information governance issues (e.g. fear of triggering an ‘alert’).
Main findings: mobile SCR
“In a pilot study supported by an independent IT supplier in which district nurses were lent portable digital assistant (PDA) devices to access the SCRs of patients they visited on their rounds, initial technical and operational challenges were overcome for the duration of the pilot.
” Overall, the nurses found PDAs useful and many accessed SCRs regularly, though they would have liked more clinical information on the records. The PDAs were recalled by the supplier and subsequent negotiations centred on the cost of supplying the devices and who would meet these costs.
“A number of ‘wicked problems’ became recurring agenda items in national and/or local meetings.
– Content and scope of the SCR – in particular, that the task of defining a standard ‘minimum dataset’, ‘enrichment dataset’ and ‘exclusion dataset’ proved more difficult than originally anticipated and despite much effort had not been achieved at the time this report was submitted;
– Data quality – in particular, the tension between setting a high standard for a GP practice to be allowed to join the programme (hence SCRs would be more likely to be complete, accurate and trusted by clinicians) or lowering this standard so as to increase the overall number of records and thus the ‘hit rate’;
– The consent model – in particular, that some front-line staff were reluctant to ask consent to view the SCR at the point of care because they saw this as unworkable, inappropriate or stressful;
– Information governance – in particular that fears about possible security loopholes tended to generate expensive and time-consuming technical fixes and that the system of alerts designed to pick up rare incidents of malicious access was perceived as cumbersome, bureaucratic and intrusive by some staff
– “Technical” problems, which in reality often had social, political and legal elements as well; and
– Children – in particular, questions of consent and information governance raised by cases of ‘at risk’ children whose parents may seek to opt out on their behalf and the question of whether and how the SCR might be used to support child protection work.
Wicked problems had a number of common characteristics:
– They spanned the different ‘worlds’ of different stakeholder groups which brought different assumptions and values;
– They involved a tension between different philosophical models of reality (‘hard’, rationalistic, factual versus ‘soft’, contextualised, interpretive);
– They tended to include a claim on contested resources (i.e. not everyone agreed that money or time should be spent addressing them);
– They were vulnerable to multiple external influences, some of which were not under CFH’s control;
– They had complex interdependencies with other problems and issues in the programme; and
– They produced unanticipated ramifications elsewhere in the system.
Main findings: HealthSpace
Fewer people registered for HealthSpace during the period of this evaluation than early strategy documents had predicted. Explanations for this included:
-The SCR and HealthSpace programmes, originally linked at policy level, were later uncoupled both nationally and locally. Funding for HealthSpace moved from the NPfIT to the Darzi Next Stage Review stream, and many PCTs decided to address the SCR roll-out first and then invite patients to register for HealthSpace to view their SCR;
– The initial version of HealthSpace was seen as clunky and its functionality limited;
– A proposal for HealthSpace Extension with greatly increased functionality was initially rejected for funding and a scaled-down version based on a more recent survey of what users wanted only gained funding in January 2010; and
– The registration process for HealthSpace was complex and a planned technical solution to allow online registration for advanced accounts had not yet become available.
“In our study of the use and non-use of HealthSpace by patients, very few people who had registered for a HealthSpace account were willing to be interviewed.
“The main reason for declining was that they were not actively using the technology and not interested in saying why this was. HealthSpace users interviewed found the current release of the technology of limited value; some had high hopes for future enhancements in functionality.
“One informant described the ‘sleeping gym membership’ phenomenon: registering for HealthSpace, accessing it once, then losing interest. Our study was not designed to quantify this phenomenon.
Ethnographic observation of a sample of people with diabetes revealed insights about how HealthSpace may or may not help with the lived reality of chronic illness. In particular:
– Some people appeared to lack the cognitive capacity, health literacy or IT literacy required to use a technology-based health organiser. Others were either not motivated to reflect on the progress of their condition or felt that this was a task for their doctor or nurse
– Some had no access to computers or saw them as serving other purposes in their lives (games, shopping, social networking)
– Some were already using other ways of documenting and monitoring their condition e.g. paper (e.g. diabetes diary), bespoke software (Excel spreadsheet), or downloads for digital personal organisers (iPhone ‘apps’) and found these more fit for purpose than HealthSpace
– Many patients’ needs were not primarily for codified data (e.g. blood glucose levels) but for practical knowledge of how to live with their condition and for emotional support. They tended to get this from other people (e.g. relatives, local diabetes support group, Facebook)
– Some patients were constrained by poverty, an adverse physical environment (e.g. poor housing, overcrowding), major family stress, or serious disabilities related or unrelated to their condition (e.g. depression, stroke). Monitoring and managing their long term condition competed with these other problems for emotional and material resources and was rarely top of the priority list.
“Attempts to introduce HealthSpace Communicator in three pilot practices produced examples of patients whose access to their GP, overall care and satisfaction appeared to be significantly enhanced by this technology, but such cases were rare.
“Even in these highly selected volunteer practices, and especially more widely, questions remain about the acceptability of Communicator to patients and staff and how its use could be aligned with the culture and routines of general practice.
“Attempts in one locality to link an integrated record scheme for long term conditions (supported by an independent IT supplier and already in use between primary and secondary care) with patient access to records via HealthSpace met operational difficulties. Enthusiasm from patients, clinicians, the PCT and the supplier of ‘middleware’ was high and much work was undertaken by all parties. But challenges relating to information governance and complex commercial relationships had not been overcome by the time this report was submitted.
Other highlights from the report
“The ability of the SCR to add value in such situations (when patients cannot communicate properly) is crucially dependent on data quality…”
“The most striking overall characteristic of the SCR and Healthspace programmes was their scale and complexity… [they] spanned five different worlds – political, clinical, technical, commercial, personal – with different institutional logics…
“Differences in norms, values, priorities and ways of working between these five worlds, and imperfect attempts to bridge these differences, accounted for much of the instability in the socio-technical network – and this in turn explained many of the challenges and frictions encountered …
“CfH’s world was predominantly political but also commercial and technical. Its activities were closely aligned with the prevailing government policy …”
CfH – generously resourced
“At the time of the evaluation CfH was generously resourced and could respond to problems by allocating staff and money to address them…”
“A prominent finding in this study was the large amount of work involved in the SCR and HealthSpace programmes, the difficulty and complexity of this work, and its critical dependence on the qualities and capability of particular people.”
CfH – the good news
“Towards the end of the period we were evaluating, there was evidence of a more mature and responsive relationship between CFH staff and front-line implementation staff, born of a developing understanding of one another’s ‘worlds’. Relationships between CFH staff and GP system suppliers also appeared to have matured for similar reasons.”
Wrong assumptions made about the reality of clinical work?
“The SCR and HealthSpace technologies contained a number of inscribed assumptions about the nature of illness and the behaviour of patients and staff. For example, inscribed in the SCR was the assumption that GP practice staff would enter all key data in coded fields on the local record…Mismatches between these inscribed assumptions and the reality of clinical work or living with illness explained much of the non-adoption, partial adoption and abandonment of these technologies at the level of the individual user.”
“The question of how to measure success in these programmes was contested. We documented 28 different metrics used for the SCR programme and 14 for the HealthSpace programme. Whilst some metrics appeared to indicate considerable progress, these came with caveats.”
“At the outset, stakeholders from all ‘worlds’ had shared a number of expectations of the material and technical properties of the SCR and HealthSpace technologies (e.g. many had imagined that the SCR would be near-universally accessible to staff and patients, that it would offer ‘complete and accurate’ information and that it would ‘work’ with minimal maintenance effort).
“Given these unrealistic expectations, the first releases of the technologies were destined to disappoint: they were perceived as difficult to access, ‘clunky’ to use, offering considerably less functionality than expected and raising numerous ongoing operational challenges.”
Was Prince 2 right for the complexity of the task in hand?
“The Prince 2 management model adopted by CFH (in which explicit goals and milestones are systematically defined, pursued and signed off) appeared to be an efficient business tool for managing the parts of the programme that could be controlled, isolated into discrete work packages and ‘managed’ in the conventional sense of the word.
“But the sheer complexity of the socio-technical network, its embeddedness in wider institutional structures and the fact that many risks were outside CFH’s control meant that this “de facto standard” had limited impact in many parts of the programme, particularly the ‘wicked problems’ …”
Tension between national coordination and local ownership
“The huge scale of the programmes inevitably brought increased complexity as well as a tension between ‘national coordination’ and ‘local ownership’. The tension between standardisation (which helps stabilise the socio-technical network) and contingency (which reflects and responds to local needs and priorities) can never be resolved; rather, it must be actively and creatively managed – and this gets harder as the network gets bigger.”
Who owns medical records – particularly when things go wrong?
“The scale of the SCR programme, along with the struggles of the Information Commission to apply data protection legislation in a way that keeps pace with technological innovation, has created new ambiguities about who now ‘owns’ patients’ medical records, who is responsible for assuring the quality and confidentiality of the data on those records and in what circumstances consent should be asked for sharing these data.
Does a tick-box Risk Register do more harm than good?
“Risks identified in early strategy documents had included delays in the delivery of compliant GP systems, difficulty introducing new business processes in NHS organisations, technical problems (e.g. interoperability), inadequate administrative capacity in the NHS, “professional resistance”, high patient opt-out rate and low use at the clinical front line.
“Measures to mitigate these risks had been couched largely in terms of providing a clear scope and specification for the technologies, adjusting deployment schedules to align with delivery dates from different suppliers (commencing with the most compliant), ensuring sound business processes and ‘communication about the benefits and importance of the SCR’.
“Some risks in the programmes were thus identified at the outset and successfully mitigated. But a number of mission-critical risks could not be mitigated and/or were not identified or fully explored.
“The standard DoH approach of assessing options and risks by a highly formalised process of assigning quantitative scores to subjective perceptions about complex issues may have lent a spurious objectivity to the risk assessment process and diverted attention from systematic qualitative methods such as deliberation or defending one’s ideas in front of an audience.”
The danger of national systems
“… nationally shared information systems, though expected to bring increased clarity, transparency and trust, may actually lead to confusion, paradox, and loss of trust.”
Can the SCR ever be a single source of truth – if not is there any point in the programme?
“Most criticisms of the SCR and HealthSpace programmes to date have been presented as technical (‘wrong underlying design’), operational (‘poor programme management’) or economic (‘poor value for money’) issues, and solutions have tended to be couched in terms of better design, better business processes or tighter financial management.
“Our findings suggest that at least some of the problems encountered in the SCR and HealthSpace programmes to date are essentially philosophical. If that is the case, the urgent question for public debate is not ‘Why have most of the benefits of these technologies not yet been realised?’ but “To what extent were these programmes built on an inadequate conceptualisation of what knowledge is, a privileging of facts over values and an unjustified confidence in the possibility of ever producing a ‘single source of truth’?”
As an academic team whose task was to illuminate rather than judge the SCR and HealthSpace programmes, and whose brief specifically excluded financial audit or developing and applying performance metrics, it is beyond our remit to pass definitive comment on the success of the programmes.
We recommend that those who make such judgements consider the points below.
– Some important high-level decisions have already been signed off (and others are pending) by the DoH, HM Treasury, the boards of major IT companies, professional bodies, patient organisations and lobbying groups. Questions have been asked at this macro level about the goals of the programmes; their cost in relation to anticipated or established benefits; the extent to which they are ‘on track’ (and the extent to which fixed milestones are appropriate or helpful); whether the contractual relationship between suppliers and the state is optimal; whether the ‘database state’ has encroached too far on individual privacy and who now ‘owns’ the medical record of an NHS patient. We hope that public debate on these questions will continue and will take account of the points raised …
– There is another macro question which has so far attracted much less public debate, which relates to the role of the individual in looking after their own health and in improving health services. The HealthSpace programme was built on the assumption that a significant proportion of patients will have the motivation and capacity to ‘self manage’ their long term condition using this technology; that this will reduce costs to the NHS; and that patients’ access to their SCR via HealthSpace will contribute substantially to improving data quality. The findings of this study – that few people
are currently interested in using HealthSpace to manage their illness or access their SCR – suggest that it is time to revisit all these assumptions. Deliberation on the future of the HealthSpace programme should take account of the availability of lowcost technologies for supporting self-management and the rapid pace of change in the market for such technologies. It should also consider the logic behind the policy-level link between ’empowerment’ and a state-run online records service.
– In relation to NHS organisations, this study has shown unequivocally that the SCR is not a plug-in technology and its implementation is not a task that should be left to the IT department. Like many other components of the NPfIT, the SCR requires fundamental changes to systems, protocols, budget allocation and existing hardware and software – and also to organisational culture and ways of working. Adjustments will be required to the roles of health professionals and support staff; the competences and attitudes they need to fulfil those roles effectively; what staff are performance managed on and how; the way they relate to patients; the way they handle information; and the way they share information with others both within and across organisations. We recommend that organisations who are contemplating becoming part of the SCR programme ensure early and active involvement of staff at all levels in discussions on these issues.
– The SCR and HealthSpace programmes raise questions for individual clinicians who seek to behave ethically and in accordance with the core values of their profession. Until recently, the goals of high-quality personal care, accurate record-keeping and patient confidentiality were straightforward, uncontested and commensurable. The introduction of nationally shared records and the patient’s acknowledged right to choose what data (if any) are entered on those records and who may view them means that the values and principles which have guided the health professions for centuries now come with inherent tensions and paradoxes. We are impressed that professional bodies appear to have recognised that good clinical practice in the technological age is a complex and situated achievement which is informed but not determined by lists of frequently asked questions, and that their role is more to keep debate open than to produce final answers. We hope they continue to take this stance.
– Both the NHS and professional bodies should consider the implications of this study for the training and support of front-line staff. Our empirical data highlight the lack of predictability or universal solutions at the level of the fine-grained detail of the patient encounter. We have shown that front-line staff must take account of the emergent detail of particular situations when considering how the consent model should be operationalised, how and with whom patient data should be shared and whether data can be trusted. These findings raise questions about the extent to which standard operating procedures can or should substitute for reflection, situational judgement and real-time consultation with colleagues. To the extent that these latter skills and approaches are considered important, it must also be recognised that there is a limit to how far they can be standardised.
– The SCR is a rapidly evolving technology. The version we evaluated was ‘Release 1’, which comprised three relatively hard data fields uploaded from a single source for which the guardian of the data was readily identifiable, the consent model clear (implicit consent to upload; explicit consent to view) and the main use case relatively well-defined, though we still found variability in how staff operationalised these concepts in practice. The SCR has already begun to include an ‘enriched’ dataset which covers much broader and softer data fields and for which both content and consent to upload are differently interpreted by different staff in different settings. On the horizon is ‘Release 2’ – a plan for various staff in various NHS and non-NHS organisations to enter various types and fields of data onto the SCR for viewing by various other staff in various other contexts, for which consent will be sought and applied in various ways. Healthcare organisations from Strategic Health Authorities to singlehanded GP practices should take note that the many uncertainties implicit in the previous sentence do not lend themselves to resolution by high-level committees, no matter how exalted and/or inclusive their membership. There is much further debate to be had at local level with attention to the detail of what the proposed extensions to the technology mean for our organisation, our staff, these patients, taking account of these particular priorities, constraints and contingencies.
– The SCR and HealthSpace raise important implications for each of us as citizens. We must all make (or live with the consequences of not making) a number of personal decisions – whether to ‘opt in’ or ‘opt out’ of the SCR; whether to seek a discussion about how our own SCR should be ‘enriched’; whether to modify these decisions as the technology evolves (see previous paragraph); whether to seek access to our SCR through HealthSpace and whether and how to challenge entries we do not consider accurate. The findings of this study suggest that for most people, engaging with these questions is a better option than not engaging with them.
– Advocates of those who lack full understanding or capacity must attempt to achieve the difficult tasks set out in the previous paragraph on someone else’s behalf, sometimes in tragic and emotionally-charged circumstances. The advent of nationally shared records suggests a new and/or extended role for public-sector and thirdsector advocacy organisations in supporting such individuals and informing policy. This role appears to be one that must evolve with careful attention to what happens to real people in real situations.
– Finally, all those who care about and/or seek to influence these programmes should note that dialogue (or lack of it) occurs in the context of multiple conflicting worlds (political, clinical, technical, commercial, personal – and probably others as well). Strong feelings, misunderstandings, conflicting values and competing priorities are to be expected – and we offer no magic recipe for resolving them. But we do offer an observation from three years’ involvement with these complex programmes: greatest progress appeared to be made when key stakeholders came together in uneasy dialogue, speaking each other’s languages imperfectly and trying to understand where others were coming from (a state which has been termed ‘accommodation’), even when the hoped-for consensus never materialised.
“As the NHS reflects on an uncertain future, we believe that the fortunes of these programmes will continue to depend on efforts to bridge the deep cultural and institutional divides which have so far characterised the NPfIT.”
Summary Care Records – too big to fail? – IT Projects Blog