implementing information for health: even more challenging than expected?

8/14/2019 Implementing information for health: Even more challenging than expected?

1/69

Implementing Information For Health: Even More Challenging Than Expected?

I M P L E M E N T I N GI N F O R M AT I O N F O R H E A LT H :

E V E N M O R E C H A L L E N G I N G T H A NE X P E C T E D ?


2/69


TABLE OF CONTENTS

1 MANAGEMENT SUMMARY........................................................................... 4

2 BACKGROUND .................................................................................. 12

2.1 Introduction 12

2.2 Acknowledgements and Apologies ............................................................................. 133 ENVIRONMENTAL SCAN .............................................................................................. 14

3.1 Government Policies and Direction ................................................................................. 143.2 Service Reaction and Response .. 153.3 NHS Direct . 17

4 INFORMATION FOR HEALTH ..................................................................................... 20

4.1 Introduction . 204.2 Political Expectations and Pressures ............................................................................... 214.3 Accomplishments 224.4 General Observations ...................................................................................................... 254.5 ERDIP Lessons Learnt To Date ...................................................................................... 294.6 ERDIP and The Consent Issue 314.7 The 24-hour Emergency EHR ..................................................................................... 334 8 Th El t i H lth R d St t i O tli C 34


3/69


APPENDICES

A - IPU RemitB - NHSIA RemitC - People InterviewedD - Documents Read and/or ReviewedE - EHR-Related InitiativesF - ERDIP ReportsG - Early Findings From The ERDIP SitesH - Comments on the EHR Strategic Outline CaseI - The 8Ws Minimum DatasetJ - Events EHR


4/69


1. MANAGEMENT SUMMARY

Introduction

Over the period 6th August to 19th October 2001, and at the invitation of the heads of the InformationPolicy Unit (IPU) of the Department of Health and the NHS Information Authority, I once againvisited England to review the state of progress of Information for Health, taking account of theimplications of the emerging changes within the UK health care system.

Returning to the UK, it did not take me long to realise that the NHS was once again in the midst of asignificant period of transition. It was evident, even to an outsider, that the United Kingdom has aGovernment which believes that the NHS has to be re-organised and made to be more equitable,accountable, and customer-focused. I sensed that it is a Government that is looking for obviousprogress in reforming the public sector - spurred on in particular by negative media coverage aboutthe NHS.

In its recent policy document, Shifting the Balance of Power in the NHS (StBOP), the Governmentexpresses its desire to devolve power and decision-making down to the frontline, to decentralise, toprovide patients with choice, to give local staff the resources and the freedoms to innovate, developand improve local services. This desire pervades the changes I observed and sets the tone for myreport these are fascinating, if somewhat daunting, times for the NHS.

Credit for any valuable ideas in this report should go to those whom I interviewed and to those whowrote the excellent reports and e-mails that I was made privy to. I am deeply grateful to all of them.Without their candor and insights, my modest efforts would be academic to the extreme. I regret that


5/69


Harris Interactive Health Care newsletter, 59% of primary care physicians in the United Kingdom,and 52% of those in New Zealand, use an electronic patient record while a mere 17% of U.S. primarycare physicians claim to do so. An impressive 87% of U.K. physicians claim to use electronicprescribing as compared to a lackluster 9% of U.S. physicians.

Information for Health

When it was announced in September 1998, the Information for Health strategy was acclaimed, bothwithin the UK and abroad as visionary, appropriate and relevant to the needs of the NHS. It was seenas a solid attempt to connect key national health policies with the capabilities of modern informationtechnologies. It argued that the key to effectively supporting clinicians in day-to-day care deliverywas electronic records and that it was important to recognise that little could be accomplished until theunderlying information and communications technology infrastructure was in place. It was a nationalstrategy that was to be implemented locally an approach that was intended to foster a learningorganisation by building the information capacity locally where most information is processed andwhere the information must come from for all other initiatives.

Most saw the strategy as an honest and pragmatic attempt to build upon the work of the early 1990s.What few criticisms there were centered on vaguely worded targets, an aggressive timetable, and thechallenges to be faced around "changing the culture". Information for Heath garnered significantnational attention but the early optimism turned to doubt as it transpired that the aggressive objectiveswould not likely be attained due to the problems of modernizing the existing infrastructure, thescarcity of existing capabilities, the cumbersome procurement issues, as well as the context of fastmoving policy and culture changes.

B l 2000 i d l b h i l d l h NHS d


6/69


duplication, incompatibility, and sub-optimal use, while too much discourages user investment andinvolvement and may result in unused capacity.

Initiatives and targets

In my review last year, I commented that the NHS was in initiative overload. This year, it would besafe to add that the NHS is also in target overload. The number of targets and expectations on theservice appear somewhat onerous. Targets are everywhere - the NHS Plan, NHS Cancer Plan, theNational Service Frameworks, Out of Hours Review, and the Local Implementation Strategies toname but a few.

Even if the IM&T is accepted as one of the main underpinning platforms for a modernised NHS, Ifear that the information agenda is at risk of being diverted by the performance management agendaas a result of, the emphasis on star ratings, NHS Plan targets (though these include IM&T targets, Iwould suggest that they are seen to be less important to most Chief Executives) and a raft of other my

job as Chief Executive is on the line targets.

I could not help but sense that many parts of the NHS are feeling beleaguered, micro-managed, under-funded and suffering from a surfeit of changeitis. Many feel that they are constantly in responsemode particularly to requests from the Centre, from Task Forces, etc. Few would argue with theobjectives of the performance management targets - it is more about the number of them and the paceof change. Some would argue that there is an inconsistency between the empowerment rhetoric inStBOP and the day-to-day realities of performance management monitoring.

In my opinion, there is a pressing need to reduce the number of developments and initiatives. It would

b i f d b f k i i i i i h b l fid i


7/69


The importance of these three entities working in complete harmony should be acknowledged to beone of IfHs most important critical success factors. The same synchronicity and partnership shouldbe evident from Health and Social Services.

Shifting focus

One of the many observations I made this year was the apparent shift from the primary intent of Information for Heath in supporting day-to-day clinical practice to one of collecting data forretrospective analysis such as clinical governance. The original intent of Information for Heath wasakin to providing parents and their children with the means to make their lives more productive andsatisfying. The apparent shift in priorities seems aimed at providing friends, counselors, andgovernment agencies with information that they can use to help parents and children understand theirstate of affairs and behaviors. Both sets of communities have important needs; the challenge isdeciding which ones to concentrate on given the political realities of the day.

The current state of affairs has a comparable, and uncomfortable, feel to when the 1992 IM&T agendawas hijacked by a political imperative to move to an internal market and establish systems to

manage competition and contracts.

It was most disconcerting to learn that 70% of the hypothecated funds intended for investment inIM&T in the 2001/2 national allocations were diverted to other purposes. If this problem persists in2002/3 the NHS will fail to deliver key Information for Health objectives, particularly thedevelopment of electronic records, and this will undermine the clinical modernisation agenda in theNHS Plan. If it happens again, Information for Health will be irrelevant.

h b h d h l k f l l


8/69


under the law in respect of patient records. They may also not fully appreciate the implications of breaching them. It should not go unnoticed that negligence claims against NHS hospitals in Englandhave risen by 700 million in one year, to an estimated 3.9 billion - almost 10% of the annual NHSbudget 1999-2000 for England of 40.1 billion - according to the May 2001 National Audit OfficeHandling Claims for Clinical Negligence report.

While not an answer to the fundamental need to address issue of informed patient consent, I feel that atremendous amount of public and professional anxiety would be dissipated if all NHS organisations,regardless of whether they are in primary care, secondary care or elsewhere, were regularly recordingwho is accessing, including viewing, what data. In addition, all organisations should be expected tomake use of the audit trail data to monitor who is accessing what data.

This process need not be resource intensive or time consuming. Every night, each system couldproduce a report of unusual occurrences based on predetermined algorithms. If someone, such asthe Caldicott Guardian was required to look and act upon the report the next morning, even if theyonly randomly selected 3-4 to pursue, the number of incidents of browsing would drop overnight.The Department of Health should issue guidance on this subject as soon as possible.

Electronic records

I find it difficult to provide explicit guidance to the primary/community (non-hospital) sector inselecting and/or upgrading their EPR and information systems, as there is no single commonorganisational community model. Can anyone realistically at this time advise these groups to buildtheir EPRs based on adaptation of GP systems, on community health systems, social services systemsor even on acute Trust systems? There are many potential directions of travel and any given one may


9/69


In order to address the political pressure for an Emergency EHR, I have recommended that the NHSInformation Authority be directed to make patient medication data available to all authorised Accidentand Emergency clinicians, NHS Direct nurses and Out-of Hours GPs via an Events EHR as soon aspossible. They can build this new functionality on one of the most solid and reliable foundations theNHS has, the Exeter system. It would take immediate advantage of the fact that GP systems alreadyelectronically send data to Exeter.

Although one of the aims of the Exeter system is to support patient registration in the context of GPreimbursement, I do not believe that it would be a major technical or cultural change to also have GPssend to the Exeter system details of the patients allergies and medication data data that is currentlycaptured in many GP systems. This medication data would then be made available to all authorisedemergency personnel with an accurate audit trail of who accessed what. It could also prove veryuseful for clinical governance particularly in terms of chronic disease management and the analysisof repeat prescriptions. Ideally this new functionality should be fully integrated with the ElectronicTransmission of Prescriptions project and make use of a single national drug dictionary, part of thenational infrastructure.

It was more evident to me this year than ever before that someone from the business/deilvery sideof the NHS someone who is able to traverse traditional sectoral boundaries - has to take ownershipof the totality of the electronic records initiative. It should be an individual committed to activelysupporting a strong project management and change management agenda. Some would argue that theindividual should be a clinician. What is clear is the overwhelming evidence that those who willultimately benefit from them - rather than the information management and technology professionals -must lead information systems initiatives. The role of the latter should be to support and advise, not tolead.


10/69


NHS staff is increasingly working from local government premises and vice-versa. In some casesservice is the responsibility of one party but largely delivered by another. However a very practicalissue arises when local attempts to ensure staff have access to the network services they need run upagainst the NHS network connectivity rules. This will raise the debate about the inequality of fundingand performance management arrangements and different policies - for example where local authoritystaff are not allowed access to the Internet, while their NHS colleagues working as part of the sameteam are.

This brings up the question of where the NHS boundary lies and whether the concept of a NHS-onlynetwork has any meaning in the future particularly given that local authorities will be pushing fornetworks, which crisscross traditional boundaries. As reported last year, some are of the opinion thatthe Internet will become the common vehicle even for confidential communications.

NHS Direct

I observed the growing consensus that NHS Direct has the potential to become a truly integral part of the NHS some would argue it has already proven itself and will only get better. I would have to say

that the Government has got this one right, i.e. an evening, weekend and holiday service to assistBritish citizens with any unplanned health crisis that they encounter even if there are still someGPs who remain to be convinced that it will help them. I believe that NHS Direct provides a bonafide opportunity to realistically redesign the way care is managed and delivered.

Although I did not spend a great amount of time in and around NHS Direct, nonetheless I am of theopinion that they should not be burdened with the development of Electronic Health Record (even theemergency aspects of it) at this stage of their existence. NHS Direct have enough on their plate


11/69


the same way they did handsaws by sawing back and forth. They would certainly use the chainsawsdifferently than handsaws, but they would not automatically know the best way to use the new tools.IT tools are no different. When the tools change, the people and the business processes must adjust.Business value increases when users are determined to work with the new tools, but the valuedecreases when the users are not motivated.

Much research has been done in an attempt to identify the key factors that predict EPR/EHRimplementation success. Over 150 factors have been identified, but only two, "top managementsupport" and "user involvement" are consistently associated with successful implementations. Severaladditional key elements have been repeatedly identified:

Local champions must actively and enthusiastically promote the system, build support,overcome resistance, and ensure that the system is actually installed and used.

It must be recognized that it can take at least six months of EPR/EHR usage before anydecisions about the success of the technology introduction (particularly in terms of individualworker productivity) can be made.

"Buy-in" of the organization is important. All users must clearly see the need for the changeif they are to support it.

Put another way, is f (D, V, S) > R? This is an expression of Gliechers Change Equation. It says:

In order for change to occur successfully, the combination of D issatisfaction with the present situation, a V ision of a more desirable future, and the knowledge of the first Steps totake in moving towards that future, must be greater than the Resistance to, or costs of, thechange. If any of the first three factors are missing, then change will not take place


12/69


2. BACKGROUND

2.1 Introduction

In the spring of 2001, I was invited by the heads of the Information Policy Unit (IPU) of theDepartment of Health and the NHS Information Authority (NHSIA) to comment on the state of progress of Information for Health (IfH) including the implications of the emerging changes withinthe English health care system. It was agreed that I would devote 1/3 of my time to the IPU (Appendix

A) and 2/3 of my time to the NHSIA (Appendix B).

During the period of 6 th August 19 th October 2001, I met with over 50 individuals on one or moreoccasions (Appendix C). I also read several documents as well as numerous e-mails and letters(Appendix D).

My IPU work was to be guided by the statement from Building the Information Core: In June 2001the work of the demonstrator sites will be assessed with a view to making policy statements by

September 2001 in areas such as the development of the 24 hour emergency EHR, standards for primary/community EPRs etc .. The primary source of materials for the review was to be the ERDIPdemonstrator site reports on the NHSIA web site. It was decided that I would not visit any ERDIPsites as I did last year. I was advised to take it as a given that the primary priority in terms of theemergency EHR is the tool to assist in the day-to-day delivery of care as opposed to providing thedata to support clinical governance, epidemiology and retrospective analysis.

The following statements from the Secretary of State were to be kept in mind during the review forthe IPU:


13/69


2.2 Acknowledgements and Apologies

Credit for any valuable ideas in this report should go to those whom I interviewed and to thosewho wrote the excellent reports, letters and e-mails that I was made privy to. I am deeplygrateful to all of them. Without their candor and insights, my modest efforts would be academicto the extreme.

I regret that in keeping with my promise to not name names, I am unable to publiclyacknowledge a number of people who I think are right on in terms of the course of directionand what should be done.

I accept full responsibility for any and all errors of omission and commission and for anythinking, which some may consider to be too radical and/or not politically acceptable. Iappreciate that many of the Ministerial commitments have to be taken as givens. However if atrain is headed down a track where a bridge in the distance may collapse, it is surely toeveryones benefit to be forewarned.

I apologise if the report does not answer everyones questions. The further I delved into past andrecent developments, the more convinced I became that certain specific actions should beundertaken. Hence my modest recommendations which attempt to find a balance between thepolitical imperative to get on with it while retaining the spirit and intent of the originalInformation for Health objectives.

In sincerely trying to tell it as I see it, I am acutely aware that others may view it differently. In


14/69


3. ENVIRONMENTAL SCAN

3.1 Government Policies and Direction

It would be an understatement to assert that the NHS is in the midst of a significant period of transition. It is evident, even to an outsider, that the United Kingdom has a Government whichbelieves that the NHS had to be re-organised and made to be more equitable, accountable, andcustomer-focused. One senses that it is a Government that is looking for obvious progress in

reforming the public sector - spurned on in part by negative media coverage about the NHS. TheGovernment expresses a desire to devolve power and decision making down to the frontline, todecentralise, to provide patients with choice, to give local staff the resources and the freedoms toinnovate, develop and improve local services.

The Governments vision has been clearly documented in a number of key policy documents,legislative acts, and specific actions. Most notable among these have been:

Department of Health reorganisation, including the integration of the Modernisation Agency Development of National Service Frameworks

E-Government Strategy NHS Plan Shifting the Balance of Power in the NHS (StBOP)

The political expectations seem to be quite clear:


15/69


other services, as are care professionals working in community settings. There are new methods of access that have developed rapidly over the last few years. The development of call centre servicessuch as NHS Direct and Care Direct, of walk-in centres, of new ambulance and paramedic servicesand the new roles for pharmacists as well as the development of A&E services, all enable the patientto enter onto a pathway of care through a range of gateways. Eventually, an integrated care pathwaywill be needed to identify locally agreed multi-disciplinary practice, based on guidelines & evidencewhere available.

Change also manifests itself in the Audit Commission advice to local authorities, which are to have anexpanded role in overseeing local health services. Their expanded scrutiny role will be to play a keyrole in improving local health, and health services, provided that realistic aims and clear ground rulesare agreed. The new overview and scrutiny committees will look at issues of local health, such aspublic health concerns or accessibility to health care. The Commissions report warned that theexpanded role represents a difficult challenge for local authorities - the committee members will needto gain new skills and need to receive a basic grounding in how the NHS works.

Change continues unabated. A very recent announcement indicated that the work of the 300-400

Primary Care Trusts (PCT) is to be co-ordinated by new PCT federations which are to be basedaround the new strategic health authorities. They will not be formal NHS structures but they areexpected to co-ordinate functions such as specialist commissioning. The way they work is to bedetermined by the PCTs themselves yet another manifestation of empowerment by letting localcommunities decide for themselves.

I commented last year that the NHS was in initiative overload. This year, it would be safe to addthat the NHS is also in target overload. The number of targets and expectations on the Service


16/69


The 28 new Strategic Health Authorities (StHA) are to become legal entities in the autumn of 2002 when the legislation is changed, though they will run as shadow StHAs for all intentsand purposes as of April 2002

The existing 8 Regional Offices will disappear in April 2003, and the 4 new RegionalDirectors of Health and Social Care will have different roles and responsibilities

There is some evidence that the workforce, particularly the GPs, is not in a buoyant move about all thechanges (West article). West argues that doctors' unhappiness is due to their feeling overworked andunder-supported. They hear the promises but then must explain to patients why the health servicecannot deliver what is promised. Endless initiatives are announced, but on the ground doctors find thatoperating lists are cancelled, they cannot admit or discharge patients, and community services aredisappearing. They struggle to respond, but they feel as though they are battling the system rather thanbeing supported by it.

On another front, though most Chief Executives praised the Governments plans for moving powerand responsibility closer to the front line of clinical care, 75% of them believed that the timescales andrate of change promoted in StBOP would delay the delivery of the NHS Plan (Walshe article).

Concern has been expressed that most PCTs will likely be fully absorbed for 1-2 years with thepragmatic realities of setting up a new organisation. The Walshe survey also revealed that most Chief Executives fear that the PCTs may not have the managerial capacity and maturity to fulfill theexpectations on them. PCTs will also likely devote many of their early energies to their ownperformance management targets and hence may have difficulty addressing what needs to be done if the modernisation agenda is to be met.


17/69


and function of the Internet now is like asking the Wright brothers at Kitty Hawk if they were aware of the potential of frequent flyer programs.

3.3 NHS Direct

That NHS Direct (NHSD) has the potential to become a truly integral part of the NHS is withoutquestion some would argue that it has already proven itself and can only get better. The increasingnumber of phone calls being handled speaks for itself, as does the successful integration in some of the 22 sites with Out of Office Hours services and GP cooperatives. One would have to say that theGovernment got this one right, i.e. an evening, weekend and holiday service to assist British citizenswith any unplanned health crisis that they encounter even if there are still some GPs who remain tobe convinced that it will help them. Those NHSD sites closely integrated with local ambulanceservices and A&E departments will continue to provide valuable lessons on what works best and whatpitfalls to avoid. NHSD provides a bona fide opportunity to realistically redesign the way care ismanaged and delivered.

If the heart of the NHSD is its nurses and telephone receptionists, the nervous system of NHSD is an

algorithm-based decision support triage system designed to aid the assessment of undifferentiatedclinical symptoms (NHS CAS). The system aids the clinician to determine a safe level of care for thepatient. The system also supports the provision of self-care advice to callers. A face-to-faceapplication for the system is currently in the process of development. As well as redesigning thepresentation of NHS CAS to make it easier for clinicians to use, this work will also aim to link thealgorithmic content with care pathways for common presenting problems. This development may seethe system become a standard feature in ambulance services, A&E Departments, minor injury clinics,OOH GP services (and some regular office hours services) as well as walk-in centres.


18/69


expanding their workforce so that they can accept more calls a concern to Trusts who are alreadyshort of nurses), technical issues (e.g. merging their existing systems), marketing issues (escalatingthe acceptance of NHSD amongst the GP community who have reservations about potential access totheir data), and organisational issues (rolling out the CAS decision support functionality so that itcan be used by others).

Other improvements that have already been identified and are more specific to the EHR include:

Mapping to the National Strategic Tracing Service with the ability to access standard nationalpatient demographic data in order to realise the potential for NHSD to eventually contribute toan EHR. This means collecting the NHS number on all calls where the callers are willing toidentify themselves - which in practice is the large majority. This will necessitate the Britishpublic becoming much more familiar with their NHS number and why it is important thatthey have it with them at all times.

Dealing with the potentially political and complex issue of informed consent and verificationof caller identities. There is a difference in the processes of face-to-face care provision anddistance provision of care. In existing practices, records are held at the point of provision andallow a traditional human verification of patient identity. GPs, as an example, rarely give outinformation to inappropriate parties and their staffs understand their responsibilities. It haseven been said that husbands and wives are some times surprised at their strictness. If NHSDstaff are to access patients' records they will have to be able to verify the identity of the callerand to leave an access audit trail for a Caldicott guardian or the patient to check.

Numerous changes suggested by those at on the front lines have to be priorised a process


19/69


o As all input must currently be in uppercase, reports are generated which are belowmodern output standards

o Development of a unified back end is needed in order to interface with a variety of OOH services systems

o Etc.

Critical to NHSD populating an EHR will be defining the clinical data (much of which will need to bestructured and hence coded), which will necessitate an exchange between NHS CAS and othersystems - in particular GP systems. There is experience from existing work on electronic records toinform this. There is also the scope to refine this as a result of the work to integrate NHS Direct withOOH services, in hours primary care services and ambulance services. One would also hope thatSNOMED CT would play an integral part in this development.


20/69


4. INFORMATION FOR HEALTH

4.1 Introduction

When it was announced in September 1998, the Information for Health (IfH) strategy was acclaimed,both within the UK and abroad as visionary, appropriate and relevant to the needs of the NHS. It wasseen as a solid attempt to connect key national health policies with the capabilities of moderninformation (computers and communications) technologies. It argued that the key to effectively

supporting clinicians in day-to-day care delivery was electronic records and that it was important torecognise that little could be accomplished until the underlying information and communicationstechnology infrastructure was in place. It was a national strategy that was to be implemented locally an approach that was intended to foster a learning organisation by building the information capacitylocally where most information is processed and where the information must come from for all otherinitiatives.

Most saw the strategy as an honest and pragmatic attempt to build upon the work of the early 1990s.What few criticisms there were centered on the vaguely worded targets, an aggressive timetable, andthe challenges to be faced around "changing the culture". IfH garnered significant national attentionbut early optimism turned to doubt that the aggressive objectives could not be attained due to existinginfrastructure, existing capabilities, procurement issues, as well as policy and culture changes.

By late 2000, in response to developments both internal and external to the NHS, an update toInformation for Health - Building the Information Core (BIC) was issued which reflected thechanging NHS priorities as documented in the NHS Plan as well as the emerging e-governmentstrategy.


21/69


The Governments aim is to deliver a national health service that improves equity of access, andensures that a consistently high quality of service is provided to patients and to the public. Theachievement of the Government's targets for the NHS will rely on the provision of efficient andeffective information systems to enable the benefits for patients and the public to be achieved. TheGovernments drive to modernise services, as part of its e-Government agenda, has placed newdemands on public sector organisations. For the NHS, the goal of achieving widespread availability of reliable and accurate electronic patient records will require on-line, real-time access to reliable andaccurate tracing services.

The modernisation objectives set out in the NHS Plan and in the NSFs for key clinical areas - CHD,Cancer, Mental Health, Diabetes, Care of the Elderly - state explicitly the need for clinical pathwaysand patient journeys to be supported by electronic clinical records. The crucial role for IfH inunderpinning the NHS modernisation needs to be recognised more explicitly and be reflected in amore 'joined up' performance management of the NHS.

As I commented earlier about the Services reactions to the Governments direction, so too is there areaction in the information community. Given that there is a definite drive towards devolution of

responsibility through StBOP, how can IfH and BIC square up with this transference? Even if effortwas spent attempting to make all the links, is there the capacity to join all this up? In the last twoyears, it has proven very difficult to effectively align the IPU and Primary Care Branch information-related initiatives - let alone the NHS Direct work - with the wider IM&T agenda.

4.2 Political Expectations and Pressures

The Governments expectations are perhaps best exemplified by the many quotes about the impact


22/69


What seems to be ignored, or at least overlooked, is that much of IfH is about infrastructure thebasic underlying and linking framework that provides shared resources for healthcare providers andpatients enabling information to flow in an appropriately structured, identifiable, unambiguous andsecure way. As pointed out in the NHS Infrastructure Service Strategic Outline Case, the NHS hashistorically adopted a piecemeal approach to the procurement and implementation of infrastructureservices. While progress has been made in individual areas, the lack of commonality has led to delaysand barriers to communication due to incompatibility between systems. Two particular issues are thedifficulties of deploying new technologies and the difficulties of managing common levels of attainment across the NHS.

Infrastructure breeds impatience. It is important to note that the provision of infrastructure services isan enabling mechanism. The infrastructure itself will deliver some benefits, but the main outcomeswill be achieved by the provision of additional applications and services. As with any infrastructure,Information Technology (IT) infrastructure does not provide direct business performance; it enablesother systems that do yield business benefits. IT infrastructure is strikingly similar to other publicinfrastructures such as roads, hospitals, sewers, schools, etc. They are all long-term and require large

investments. They enable business activity by users that would otherwise not be economicallyfeasible. They are difficult to cost-justify in advance as well as to show benefits in hindsight. Theyrequire a delicate investment balance - too little investment leads to duplication, incompatibility, andsub-optimal use, while too much discourages user investment and involvement and may result inunused capacity.

4.3 Accomplishments

It is important to acknowledge that much has been achieved since IfH was announced three years ago.


23/69


What the Harris report does not acknowledge is that there are a number of British GP practices thatare already virtually paperless. Even better, the clinical data in their computer systems is using a

common coding system (READ) a tremendous advantage to the clinical audit and clinicalgovernance aspects of the modernisation agenda.

It is the envy of many countries that by 13 September 2001, England had:

8469 (97%) practices with an NHSnet line installed 8621 (98%) practices with an Acceptable Use Policy signed, which represents practices

committed to the NHSnet security policy and therefore committed to joining the network


24/69


A more reliable and robust NHSneto My 1999 review commented that this was perhaps the greatest risks facing IfH at that

time a risk which has since been greatly diminishedo Though improvements have been made, there is still concern that it is not always on,

and it is still not quick and unfailing enough to support the type of activities that theEHR will demand

o An increasingly wide range of users will require access to the network (section 3.4.3of the NHS Infrastructure Services SOC)

o Without a rock solid NHSnet, little else that is national in nature matters, no matterhow good it is.

A national NHS Number perhaps the most critical item needed on the EHR journey Open Exeter and NSTS - the foundations of an enterprise-wide (in this case the whole

country) master patient index - oh how Canada would dearly love to have one Over 300,000 health care professionals in the national e-mail directory The decision to fund all NHSnet messages centrally The Requirements for Accreditation (RFA) for GP Computer Systems warts and all it has

facilitated constructive convergence and is a standards setting process that most countries donot have

Changes to GP terms and conditions permitting the use of electronic records and removing thelegal requirement to keep paper records

The ERDIP program a concrete commitment towards the research and development of theEHR

Pathology Messaging even if it has been scheduled for a number of years, it is a capabilitythat a number of countries are pursuing as a priority. Few, however, will be able to say thatthey have 60% capability by March 2002, let alone 100% by December 2002


25/69


4.4 General Observations

The following are observations garnered from many conversations and the documents reviewed.They are not in any order of priority.

1. Am I wrong? Has there been a shift from IfHs primary intent to supporting day-to-day clinicalpractice to one of collecting data for retrospective analysis (e.g. clinical governance)? IfHsoriginal intent was akin to providing parents and their children with the means to make their livesmore productive and satisfying. The apparent shift in priorities seems aimed at providing friends,counselors, and government agencies with information that they can use to help parents andchildren understand their state of affairs and behaviors. Put another way, the original intent of IfH was akin to aiding pilots and passengers while the retrospective analysis approach is aimed atassisting airline analysts and regulatory agencies. Both sets of communities have importantneeds; the challenge is deciding which ones to concentrate on given the political realities of theday.

The current state of affairs has a comparable, and uncomfortable, feel to when the 1992 IM&T

agenda was hijacked by a political imperative to move to an internal market and establishsystems that would manage the competition and contracts exemplar.

Notwithstanding the potentially uncoordinated creation of new clinical datasets to satisfy NSFrequirements for Cancer, CHD, Diabetes, Older people, and Mental Health, many of the existingdatasets are administratively rather than clinically focused and likely founded on outmodedmodels of care that are constrained by organisational boundaries. Counting is currently vertical(functions such as inpatient care); in the future counting will have to be horizontal (pathways) andit is going to be significantly more complex. If everyone is not careful, there are going to be


26/69


On the famous EPR level 3 targets, I was unable to find anyone who could give me a definitiveanswer as to what percentage of the NHS Trusts were there yet.

3. There are 40+ EHR-related projects functioning at national level (Appendix E). There are also anumber of non-health initiatives that are very relevant to the EHR journey, namely:

a. Civil Registrationb. e-Government information framework (e-Gif)c. Information for Social Care Strategyd. Local Authority (Social Services) based Local Information Plans (LIP) - surely a key

element of the EHR given the clear policy of integrated care with a single commonassessment process

What is particularly concerning is the wide range of people from a wide range of organisationsleading all of these initiatives. How aware are they of each others efforts? It is not clear who isbringing it all together. How do all these initiatives join up? Does the big picture exist if so,it should be brought out and passed on to the Service?

4. There are tensions in the field. Those attempting to implement EPRs feel that emphasis is all onprimary care and the EHR. At the same time, some of the primary care and community groupswithin the LIS communities feel that most of the IM&T resources keep going into acute care. Isit a valid observation that the NHSIA seems to be devoting very little of its resources to the EPR(vs. the EHR) agenda?

Some are arguing that the approach to implementing EPR systems in the NHS may be toofragmented with each Trust or local NHS community deciding its own approach. They would


27/69


feel disengaged from the small number of sites who were. The ERDIP program is better than itwas last year in terms of making reports available on the NHSIA web site but much more needs tobe done. Publishing reports is only a small part of learning.

The lack of learning is particularly apparent in terms of the lessons from outside of the ERDIPsites. One only sporadically reads or hears of good work being carried out in places such as SouthHumber, Herefordshire, or Kensington, Chelsea and Westminster, to name a few. What about thelessons being learnt in Scotland such as the web-based EHRs in Inverness and Dundee or theTayside Diabetic Programme?

6. Is the LIS process at risk of disappearing? It has facilitated local health economies (LHE)working together across sector and professional boundaries. IfH is supposed to be all about LHEsworking it out together locally, is it not?

Undoubtedly, the strong local health economies will stay together. Their targets are already likelyaligned to business need (NSFs, etc.). They will also be the ones to successfully integrate theirLIS and LIP. The shaky LHEs may stay together but what will the incentives be for PCTs to

work collaboratively? It would be a loss if the weak LHEs dissolved but they most likely will.One anecdote was recounted that a local health economy with 5 PCTs agree on one thing howmuch they distrust each other.

There are emerging requirements for PCTs to develop and support population health requirementsas well as service delivery. These requirements necessitate improved access to comprehensiveand accurate patient demographic and clinical history databases to support analyses that include:demographic profiling; morbidity assessment; epidemiological analysis; service monitoring andplanning; and distribution and optimisation of resources across communities. How many PCTs


28/69


9. It was most disconcerting to learn that 70% of the hypothecated funds intended for investment inIM&T in the 2001/2 national allocations were diverted to other purposes. If this problem persistsin 2002/3 the NHS will fail to deliver key IfH objectives, particularly the development of electronic records, and this will undermine the clinical modernisation agenda in the NHS Plan. If it happens again, Information for Health will be irrelevant.

The problem with what funding there has been is that it has been prey to more immediate targetsin IM&T and beyond. Once into the electronic record territory, a longer-term investmentapproach to guarantee blocks of funding for both development and implementation over several

years as well as the on-going revenue costs is going to be needed.

10. None of the current population record systems provide the functionality required to achieve thestrategic objectives and the duplication in them results in increased cost and complexity. It isestimated that there are currently some 250 disease registers. Most of these have been developedindependently to meet specific requirements of a particular community of interest, and containdata that is defined in many different ways. This piecemeal approach compromises the ability of health planners to do their work, and can potentially expose identifiable patient data unnecessarily

through the failure to implement appropriate confidentiality protocols.

11. Progress was noted in terms of the national e-mail project known as Project Connect. Almost300,000 NHS clinicians now have a unique e-mail id - based on the SMTP addressing protocol -in order to facilitate simple, but important, communication amongst themselves. However, all isnot perfect.

For some reasons the GPs were not given standard e-mail ids (i.e. first name.last name@.).Instead they were given meaningless ids related to their practice code numbers. As a result, many


29/69


4.5 ERDIP Lessons Learnt To Date

As of September 15, 2001, of the 82 reports written since November 2000 (documents which are post-PID and project briefs), only 17 contain the type of information that could be used to recommend acourse of direction to follow (Appendix F). There was speculation that some sites had producedreports, which were not on the NHSIA web site these were obviously not reviewed.

Most of the reports on the NHSIA web site are simply:

Descriptions/plans of what is intended to be done or evaluated Patient questionnaires PowerPoint presentations Requirements and/or technical specifications (useful in terms of identifying the complexities) Status reports with little or no discussion of findings, issues, or lessons learnt

Given that most of the sites are only one year into their experiments, it is not surprising that less thanone in four of the reports provide the type of information from which a clear direction of travel can be

defined. Is it valid to infer that some of the reports were generated simply to put something on paperin order that funding would continue to flow?

Notwithstanding this, there are none-the-less a few excellent and informative reports, namely:

Bradfords emergency EHR progress report Cornwalls creating a single population index Durhams ethical framework for the EHR


30/69


management (including willingness to share data), password control, procurement, resourcing, size of workstation monitors, training, etc. Undoubtedly all of the ERDIP sites will come up with similar andadditional findings when they produce their final reports in the summer/fall of 2002. It should benoted that 44% of the 383 products in the ERDIP Joined Up Deliverables Master List have targetdates after September 2001.

The IPU asked me to find out how many ERDIP sites are not making progress due to the lack of standards? This was a difficult question to answer given that the majority of the reports on theNHSIA web site provide little evidence on which to support an informed conclusion.

Based on the material available on the NHSIA web site, I believe that it will not be due to the lack of national standards that some sites may not achieve the key deliverables outlined in their project briefs.The succinct reports being submitted to the ERDIP Project Board reveal that it is other issues (i.e.unrelated to standards) that are the cause of slippage, namely: meager change management, deficientsystem supplier co-operation, lack of clinician commitment and buy-in, lack of resourcing, etc.

Based on the ERDIP work to date, I am of the opinion that it is still too early to determine which

model along the EHR continuum will be most suitable at a national level:Virtual EHR Events EHR Big Box EHR

Each model has its pros and cons. The Virtual EHR contains only pointers and is based on a schemeof viewing patient data where it is located only when it is needed using Internetbased networks andweb browsers. The Events EHR (which could also be referred to as the HITS EHR in that it recordswhere and when the patient hits the system) is the overview/summary type of EHR. If pointers wereadded to it, users would then have access to more detail if needed. The Big Box EHR, where


31/69


At the end of the day it is going to come down to the clinician asking (directly or via his/her supportstaff) a number of unchanging questions:

Who is this patient? Have I got the right one? Has s/he had any previous "history" that might give me some help with deciding what to do

next? What is the recorded wisdom about similar cases? How do I schedule something to happen? How do I consign my thoughts and actions for others and myself to use in the future?

The EHR journey is taking us through terrain more complex than expected. The EHR landscape ismore like the mountains of Afghanistan than it is the deserts of Kuwait. One cannot readily see thebest route to follow even from up high.

4.6 ERDIP And The Consent Issue

The one standards-related area, which may be a very real obstruction to the sites achieving their key

deliverables, is the issue of informed patient consent and who has access to which portions of theEHR. As stated in the Populations Records SOC, whilst there is huge potential to make better use of personal data to deliver benefits to the public, this will only be realised if the public trusts the way inwhich the public sector handles its personal information which means meeting their rights andlegitimate expectations on the protection of personal privacy; and the data to deliver real benefits toindividuals. In particular, the commitment to informed consent as the norm for handling patientinformation will call for action to be taken to address the current shortcomings in the ways in whichthe NHS captures, stores and processes personally identifiable information.


32/69


The consent issue is multifarious. The following two, tongue in cheek, suggested consent statementsabout the use of clinical decision support systems (an integral part of a true EPR and EHR) recentlyappeared on a medical informatics Internet discussion group.

WARNING: our physicians and nurses are attempting to use antiquated manual recordskeeping systems and their own limited memories in an often futile attempt to deliver acomplex set of services without error. The logic of these human beings has been testedincompletely at some point in the past, but we offer no warranty expressed or implied thatany individual decision made or action taken will be provably correct. Moreover, we do not

know the effect of ageing, distractions, overwork, and failure to communicate on the overallcare you will receive. Because we do not take a systems approach to health care services, bysigning this consent you agree to participate in this admittedly error prone and potentiallylife threatening activity.

OR

In our effort to provide you with the best possible care, we frequently research the medicalliterature, often consult with colleagues who may have more experience than we, and

regularly accept the advice of medical specialty societies. Moreover, we occasionally look at medical records of patients who have had illnesses similar to yours. Please be advisedthat the literature may be wrong; the experience of our colleagues may be biased; therecords may not be complete or accurate; and that specialty societies may have conflicts of interest. It is our duty to inform you that the logic we employ has never been tested inclinical trials. Incidentally, an increasing number of the resources we access may nowreside on computers.

Along the same lines, the following serious observation was made:


33/69


The commitment to informed consent as the norm for handling patient information requires action tobe taken to address the current shortcomings in the ways in which the NHS captures, stores andprocesses personally identifiable information. In particular, it will be necessary to ensure that whereidentifiable information is required that patients are properly informed of what data is being held, theuses to which it will be put, and those who might have access to that data. Except in the case of statutory requirements, patients would also have the right to refuse consent. In all othercircumstances, steps will need to be taken to anonymise the data.

I understand that there is work underway to determine which data flows can implied consent cover,

taking into account the views of key stakeholders and what information needs to be given to the datasubject for consent to be valid. The importance of that work cannot be stressed enough.

4.7 The 24-hour Emergency EHR

The IPU also asked What policy statement can/should be made as to the development of the 24-houremergency EHR? This was another difficult question to answer in a knowledgeable manner.Although nine of the seventeen ERDIP sites have some facet of the Emergency EHR in their

mandate, only 5 have documented their early findings.A further complication is the wide range of views as to what is meant by the so-called EmergencyEHR. Much depends on how one defines emergency which is really a spectrum of unplanned (orunscheduled) need which runs from the worried well at one end to the nearly dead at the other.

Worried well Non-urgent Urgent Emergent Near Death (life threatening)

From a pragmatic perspective, the pressing business need for an EHR is on the left-hand side of the


34/69


exists to have details about the patient and to know where s/he has been in the past (i.e. the recordingof events which some argue is one of the most important functions of the EHR) in order to direct thepatient to the most appropriate service. The prevalence of elderly patients also indicates theimportance of involving social care agencies, as they often have important parts to play in the deliveryof care services to such patients.

Significant changes in the way the NHS works will be required to achieve the full benefits of thecreation of an electronic environment for the NHS through the implementation of EHRs and EPRs(regardless of which EHR model is adopted). To secure these changes, the immediate advantages to

clinicians - of improved access to patient data - will need to be greater than the perceived burden of the changes themselves. Access to emergency care data will bring significant advantage to some but only a relatively small minority of clinicians and patients. There is a real danger that the relativelylimited advantages of the interim emergency care solution will be insufficient to drive the requiredchanges in NHS practice necessary to secure the full benefits of EHR implementation.

The pressure for immediate results can be distracting. The EHR is a journey of many little steps. Thegreater the number of steps taken, the more likely it will be that the followers will seek reassurance

from their leaders that they should continue on with the trek.Notwithstanding the above arguments, if the current government is both a) action-oriented wantingto see tangible returns on their information agenda investments and, b) wanting to see some form of Emergency EHR - as a result of the famous Tony Blair quote - then what are the options available?

4.8 The EHR Strategic Outline Case

The EHR Strategic Outline Case (SOC) addresses some of the questions raised above. It is an


35/69


well as presented to many of them - to know that doing a quick read the night before ameeting and taking part in a discussion (no matter how long) is not the same as taking part ina series of intensive workshop-like sessions, with many people involved, to hammer outcommon understanding and consensus. If I have read this wrong, I apologize and amprepared to stand corrected.

It appears as if most of the preferred options in the EHR SOC point to a national solution withan implied push model. What about a pull model whereby the EHR is virtual and does notexist in physical form in one place? What about a mixed model where messages are pushed

when new data is available and pulled when the details of that data are needed? What aboutan ASP model which has the potential to eliminate the distinctions between primary,community or acute care, let alone mental health and social care? England should not feel allalone on this one. The New Zealanders just published their national strategy. It is intriguingto see that they are also caught between the centralised and distributed models as well as thepush or pull paradigm dilemma.

When it was written, IfH explored the different technologies underlying the data-push and

data-pull models but concluded that the data-push model would provide the fastest routeto a first-generation electronic health record. However, in the three years since publication of IfH, there have been significant advances in the spread of web-based technology, and theadoption of national interoperability standards (such as e-Gif). Some would argue for anEHR architecture based on the data view model using XML as a standard and morewidespread access to and use of the Internet.

Despite being published openly for comment, only 14 people provided feedback to the EHR SOC; of which 6 were but brief e-mails Appendix H highlights some of the more salient points raised


36/69


case, a messaging paradigm could be used where messages would not even need to be structured. Inthe latter case, clinical governance will require much structure in order to assure consistency, quality,etc. for benchmarking purposes.

There is a need to learn from what has happened to date and look beyond IfH in order to ensure thatthe EHR journey is still on track. Once there is an acceptance of this, then the debate about whatsin/out of EPR/EHR will change as people realise they are themselves interim steps on the way tosomething more close to what todays clinicians and patients would be expecting.

I believe many would agree that it is critically important that someone from the business side of theNHS someone who is able to go across traditional boundaries - has to take ownership of the EPRand EHR agenda. It should be an individual committed to actively supporting a strong projectmanagement and change management agenda. Some would argue that the individual should be aclinician. What is clear is the overwhelming evidence that those who will ultimately benefit fromthem - rather than the IM&T professionals - must lead information systems initiatives. The role of thelatter should be to support and advise, not to lead.

Finally, leading the EHR effort is more than a full-time job; it requires a dedicated team of people.Expecting one person to prepare the plans and lead the discussions on a part-time basis is bothunreasonable and a recipe for failure.


37/69


6. RECOMMENDATIONSThe following recommendations are not ordered in a long-term and short-term fashion. They arepresented in what I view as being the most logical order to address the issues - fully appreciating thatwhat may be logical to my mind may not be to everyone elses.

1. Harmonise the many performance management targets.

The IPU, perhaps through the National Information Policy Board (NIPB), should attempt to haveall of the service (business)-oriented targets rationalised and harmonised.

The performance indicators overload of the NSFs, Cancer Plan, etc. is, in my opinion, a seriousproblem. There are too many of them and they are not mutually exclusive. When some of mycolleagues in academia (a profession which is paid to keep abreast of materials such as NSFs) findthey cannot read all the details of the NSFs plus run their courses, there has to be some cause forconcern. If the universities have difficulty in finding enough time to include all of them in thecurriculum, one can only wonder how those in the field are coping.

Those trying to do their day-to-day jobs looking after patients in times when demand continues toexceed supply also regularly have to cope with the pressures brought on by staff shortages as wellas the explosion of knowledge about medical science including new procedures, drugs andtechnologies. Such is the case with health care providers and managers the world over. In theUK, these same providers and managers have the additional performance measures to deal with.

2. Bring together all of the EHR-related initiative leaders.


38/69


It is particularly important to synchronise both the policies and the messages emanating out of theIPU, the NHSIA and the Primary Care Branch of the Department of Health. In my opinion thereis confusion as to who holds the policy responsibility for many of the existing initiatives. Therecontinues to be uncertainty as to who should be out regularly 'beating the drum' and activelypromoting IfH throughout the Service.

The importance of these three entities working very closely together, and in complete harmony,should be acknowledged to be one of IfHs most important critical success factors. The samesynchronicity and partnership should be evident from Health and Social Services.

It is inevitable that clinical governance requirements will require structured data and hence theclinical datasets projects. One cannot help but notice that the dataset projects do not appear to befully coordinated and that the so-called minimum data sets are bordering on being maximums.It is also disappointing to see how little SNOMED CT appears to be taken into consideration inthe dataset projects. The model in Appendix I has been suggested in Canada as the propernumber of minimum data elements that all health information systems should collect. If this wasagreed as being generic and common to all clinical datasets, significant progress will have beenmade.

In my humble opinion, there would be no harm and significant value to take a very hard look atthe way the Scottish Health Service has approached the implementation of IfH. One is remindedof Tom Peters famous book In Search of Excellence which argued that small is beautiful.Scotland seems to be small enough to make things happen reasonably quickly, yet big enough todevote sufficient resources. Does this provide the English with any indication as to what might bethe optimum size for certain classes of projects?


39/69


There is a need to collect group disease pathway data (e.g. cancer) a need, which was not

present, when Information for Health was written. Clinical care networks are fundamental to themodernisation programme.

If true integration is to occur, the LIS and LIP processes and targets need to be integrated withinthe new StHA framework another illustration of something that was not present when IfH waswritten.

4. Revise the level 3 EPR targets.

The IPU, in active partnership with the NHSIA, should reframe the level 3 EPR targets into a newset of unambiguous targets that relate to providing specific functionality across the entire carespectrum of primary, secondary, community, mental health, and social care. Consider thefollowing to be the priorities:

1. Results reporting: who needs to know what happened to whom consultants, GPs, socialworkers, nurses do

2. Order Entry: who needs to do what for whom use of protocols and common order setsas well as the humdrum, but essential, day-to-day communications across sectors such asreferral letters

3. Medication Prescribing: with built-in alerts and reminders (level 4) for both physiciansand nurses

4. Enterprise-wide Scheduling: who needs to go where and when again across all care andorganisational boundaries

5. Integrated Care Pathways: what has to be done for whom complex in terms of changesto workflows


40/69


Require documented acknowledgment that the physician read the directives to anyoverride.

The coalition has taken the remarkable step of offering millions in cash incentives to hospitals thatadopt patient safety practices. The unprecedented move was sparked by employers frustrationover the rising number of medical errors; researchers estimate that between 15,000 and 90,000people in the U.S. die every year from medical mistakes.

The evidence to support computer-based medication prescribing continues to mount. A recent

Norwegian study reported that drug-related side effects might contribute to nearly a fifth of allhospital deaths in elderly patients, particularly those who have more than one illness or are takingmultiple medications (Gottlieb article). In almost half the cases looked at, inappropriate drugswere prescribed or the wrong doses or forms of drugs used.

Generic scheduling across the local health economy of complex health events (not just a pathway,but the actual scheduling rules) will bring significant benefits. At the moment, most hospitalstend to think in terms of scheduling (with referral protocols) for just outpatient appointments or insome cases theatres. But in the new NHS there will be a vital need for enterprise-wide schedulingthat extends across the LHE and clinical care networks.

A state-of-the-art scheduling system needs to offer not just more functionality than traditionalsystems but must also support for distributed scheduling handled by a variety of healthcareproviders and even patient themselves. This can only be achieved if the system is both web-basedand rules-based. What is needed is software that provides flexible template and programmedefinition; authorisation of bookings through fully customisable protocol-driven booking formsand appointment-type parameterisation; the ability to generate instructions for patients GPs


41/69


If a conceptual mind shift does not take place, there is a grave risk that both the EPRs and the

EHR will be built on increasingly obsolete concepts of inpatients and outpatients; historic modelsof face-to-face, hospital-based, consultant-led service delivery; and existing organisationalboundaries. They will not meet the challenges being faced of multi-professional, multi-organisation patient pathways, NSFs and clinical networks. The EHR needs to be a patient/clientrecord that is independent of the institution providing care at a point in time along thepatient/client pathway(s). This would seem to be in line with an NHS designed around thepatient.

Patients will be accessing their own records it is only a matter of time. The currentinstitutionally based record is not going to permit this with any degree of ease or commonality.This requires a significant change of thinking of the patient as a customer not something we dowell in health care anywhere in the world though the Americans seem to be getting better at it.

The Bury Knowle project found that patients are surprisingly receptive to the idea of taking amore active role in the management of their health and that they are prepared to become moreengaged with health professionals in the neutral ground offered by the EHR. In addition, healthprofessionals are interested in the development of the EHR and its potential to allow the healthprofessional in partnership with the patient take full advantage of the improvements in medicinethat current information technology can deliver. The interest in the EHR expressed by patients,GPs and other health professionals indicate that should a viable, affordable, scalable, andfunctionally acceptable EHR system be made available, it would significantly improvecommunication and reduce the present duplication of record keeping

I perceive that the rapid development and implementation of clinical care networks is creating afrustration due to the recognition that the individual institutional components such as acute EPRs


42/69


This brings up the question of where the NHS boundary lies and whether the concept of a NHS-

only network has any meaning in the future particularly given that local authorities will bepushing for networks, which crisscross traditional boundaries. As reported last year, some are of the opinion that the Internet will become the common vehicle even for confidentialcommunications.

This also raises a thorny issue - who runs the agenda across health and local governmentboundaries? No easy answer but a key topic that needs resolving in the future. Solving this onewill require tact and diplomacy - one certainly cannot assume that the NHS is going to be able to

dictate to local government.6. Develop a portal (broker model) to address the political need for an Emergency EHR.

The NHSIA should be directed to make patient medication data available to all authorised A&Ephysicians, NHS Direct nurses and OOH GPs via an Events EHR as soon as possible.

They can build this new functionality, the Events EHR, on one of the most solid and reliablesystems foundations the NHS has, the Exeter system. It would take immediate advantage of thefact that GP systems already electronically send data to Exeter. Although the aim of the originalExeter system was to support patient registration in the context of GP reimbursement, I do notbelieve that it would be a major technical or cultural change to also have GPs send to the Exetersystem details of the patients allergies and medication data data that is currently captured inmany GP systems. This medication data could then be made available to all authorisedemergency personnel with an accurate audit trail of who accessed what. It could also provevery useful for clinical governance particularly in terms of chronic disease management and theanalysis of repeat prescriptions. Ideally this new functionality should be fully integrated with the


43/69


An alerts capability to warn healthcare providers of the presence of any known risk factors that may be important in making clinical decisions about individual patient care

Etc.

Such an events EHR would go a long way to satisfying several of the NSF requirements, let alonean expanded clinical governance program which will inevitably stretch beyond the existingorganisational boundaries and begin to address outcomes. It would also address the need forinformation about where a given patient has been and is going a common requirement withthose dealing with unplanned situations. It would also provide the test bed for a common portal

that everyone would go through for all NHS transactions.

Clearly the consent and confidentiality issues would have to be fully resolved. It is suggested thatthe consent and access management function be put under the auspices of a new CertificateAuthority acting as an independent, public or private, trusted third party. The Authority could bestructured similarly to a commercial trusted third party in electronic commerce. One suchexample is Wells Fargo, partnered with GTE CyberTrust, which offers a digital certificate serviceto Internet merchants. Though more and more customers are spending time browsing online,many are not comfortable enough with Internet security to make a purchase. With parties such asGTE CyberTrust, they can be provided with that security assurance.

Along the line of trusted third party thinking, in British Columbia, Canada, the College of Pharmacists have been designated the legal custodians of the provincial pharmaceutical databasewhich contains the medication profiles of all persons who were issued medications in all retailpharmacies in British Columbia a database which has been used to save lives in A&E situations.All accesses to the database, including any Ministry of Health access, must be vetted by theCollege of Pharmacists Anecdotal evidence suggests that the public is more comfortable with


44/69


NHSIA - to foster and develop the standards that define how information will flow between

systems leaving it to the user community to develop the enhancement in functionality andeffectiveness?

It was also not clear how much progress has been made rolling out the NHS Number across thecountry. It was clear that every citizen did not have a plastic identification health card that theyshould then be expected to produce at any encounter with the NHS. The EHR is not likely tobecome a certainty unless all NHS organisations incorporate the NHS number into all of theirclinical systems.

Regardless of what form it takes, the EHR will require some form of NHS-wide Master ClientIndex (MCI) - some prefer to refer to it as a Master Patient Index. Every patient records systemand more generally every patient/client/citizen-focused system has at its core a client index. Thisabsolutely critical infrastructure piece must be up, running, and rock solid before any patient-centric benefits can hope to be realised. The common patient index is a cornerstone of any EHR.

A MCI accommodates multiple identification numbers for each client and reflects encounters atdifferent health and social service facilities and/or programs. These organisationally basedidentification numbers will not go away and they will need to be kept track of somewhere atleast at the LHE level, if not at a national level. The key identifier in the MCI should be the NHSNumber the already established universal health identifier for every British citizen within theNHS. The many existing facility-specific identification numbers need to be cross-indexed withinthe MCI in order to locate and retrieve data from records in systems in multiple facilities.

England is very fortunate that it has the makings of a national Master Client Index, through itsexisting Open Exeter and NSTS population-based systems two national systems that will


45/69


This recommendation suggests that the Centre concentrate its standards efforts on keyinfrastructure elements such as: national directories, an even more reliable and robust NHSnet building on the progress made as outlined in the NHS Infrastructure SOC, single logon ids, accessrules and consent protocols, etc.

7. Advise the field to concentrate on the basics.

While the Centre is concentrating on infrastructure standards, the Service will undoubtedly be re-

organising their service delivery models to encompass the new pathways (some would argue thisshould be done before any automation takes place).

Assuming that the Centre still wants a national strategy that is implemented locally, the Serviceshould be strongly encouraged to concentrate their efforts on:

Culture change a critical success factor, regardless of what type of EHR emerges. IfH isvery much about change. It is about changing the way work is done. It is about changingbehaviors - particularly information behaviors. Changing information behaviors requireschange management approaches and thinking. The ultimate goal of managing informationbehavior is to create a positive information culture - one where it's simply the norm to "dothe right information thing". Are there still over my dead body clinicians and managersaround?

Training (enough is never enough) across all sectors including GP practices. It is sovery easy to cheat on training yet when done well, it reaps rewards well beyond theinvestment costs. If the IM&T solution does not match workers practice andcomprehension the tail will wag the dog What percentage of the NHS workforce is


46/69


That being said, there is still sound advice that can be given which applies to any organisational

model: Cooperate with as many organisations in their LHE as possible in order to facilitate

greater sharing of patient data. At a minimum, ensure that there is a collaborativeplanning process (through the LIS or its equivalent). There is clear evidence that staff working locally across GP practices benefit from a familiar system interface, sharedprotocols and templates. It encourages and enables the use of practice-based systems bycommunity nurses in particular.

Ensure that sensible first steps are taken (e.g. encourage PCTs to bring together GPpractice systems) realising that gaining and retaining clinical commitment is soimportant that anything that puts that at risk (e.g. imposition of a central solution) has tobe looked at in terms of the pain/gain. Clinicians are more interested in ROT than in ROI.It is the Return On Time that is most important to them.

Investigate the use of e-mail technology (Knight article). Some trusts have been able toutilise their e-mail system far beyond a messaging system such as into supporting multi-disciplinary care. The raw ideas, prototype and experiments that can be facilitated throughe-mail can become more robust through more mature IT systems. The organisationallearning and development that can be achieved through this simpler approach can beinvaluable.

Adopt systems that simplify peoples work lives, e.g. why do GPs have to use so manydifferent forms for ordering and referrals?

Select systems that facilitate the flow of data within the LHE and, in particular, resultsreporting. An important data flow between all clinicians, regardless of their setting, isreferral and discharge data.

Ad t t th t bl t d li i l t d ti l t t


47/69


8. Address the patient consent issue.

As indicated earlier, this could be the major barrier to an EHR becoming a reality. Even if part of the final solution is revised legislation, it seems apparent that in some form or other, the consentprocess is going to have to be automated. The NIPB, in conjunction with the InformationCommissioners Office, should aggressively pursue resolving this very important matter.

As is suggested in the model in Appendix J, it would seem to make sense to have the patient

consent (and EHR access) managed nationally likely as a part of the client registry whereby inaddition to the client demographics, there is also an individuals access approvals. Alternatively,the EHR might include a statement of informed consent electronically signed by the patient orlegal or voluntary advocate that states who can and who cannot see the record - subject tolegislation and clinical governance. This might be altered at any time by the patient with an audittrail of the change maintained.

If any lesson has been learnt from the recent Bristol case, it is that informed consent and trust isparamount. There is no doubt that data on electronic databases will be subject to some misuseand breech of confidence. It seems essential then that patients have the right to give or deny theirinformed consent to disclosure of their data. Informed consent implies the understanding of apatient or their legally accepted guardian of the risk and benefits of a treatment or process.

Undoubtedly, special attention will be needed to deal with the so-called four unmentionables,namely: social factors including mental, personal relationships etc., drug and alcohol abuse,genetics, and communicable diseases. Similarly, the data about children at risk will requirecareful managing. It is likely that national legislation according to public interest will be needed


48/69


This process need not be resource intensive or time consuming. Every night, each system couldproduce a report of unusual occurrences based on predetermined algorithms. If someone(perhaps the Caldicott guardian) looked at and acted upon the report the next morning (even if they only randomly selected 3-4 to pursue), the number of incidents of browsing would dropovernight. Word would spread quickly that someone is monitoring accesses to patient data andeveryone would be more conscious of only accessing patient data that they required to performtheir duties.

Along the same lines, insist that data be protected in some fashion, that no unencrypted(personally-identifiable) data is sent over the Internet (or NHSnet). Until a national (likelygovernment-wide) encryption standard is selected, and even if it appears that there are not anyPKI products which are going to be suitable for such wide-scale deployment in the near future, aninterim strategy of making local solutions fit for now is called for.

10. Develop an active and vibrant Knowledge Management (Learning) Program.

Knowledge Management is about creating a learning environment where knowledge sharing ispart of the culture. Learning is fundamental to enhancing local creativity and nationalcohesiveness. In an information-intensive service such as healthcare it is a must have - not anice to have. It is critical to information sharing and a common direction. The NHS needstools to support real knowledge sharing so that it can become a real learning organisation basedon evidence of what works and what does not. Otherwise, the result will be fragmented systems.The NHSIA, in collaboration with other organisations such as NeLH, shoul