Select Committee on Health Written Evidence

Evidence submitted by the Renal Association and the Renal Information Exchange Group (EPR 30)


    —    Patients and health professionals in the renal community understand the crucial role of IT in delivering efficient, safe health care. This is based on 25 years experience using clinical information systems in some aspects of healthcare for renal patients.

    —    We are therefore strongly supportive in principle of the development and establishment of electronic patient records, which underlies the Connecting for Health initiative to introduce a National Care Record Service and a National Data Spine.

    —    Connecting for Health has:

    —  Failed to assure the renal community that its strategy respects clinical need as well as technical solutions;

    —  Failed to develop an understanding of the specific IT needs of ours and other specialist health communities;

    —  Failed to convince the health community that its strategy of nationwide procurement and development through large scale Local Service Providers will succeed;

    —  Eschewed opportunities for "early wins" by demonstrating benefit in chronic disease management in local health communities which would have won clinical confidence in its strategic goals and products;

    —  Threatened the survival of specialist clinical software suppliers who understand well the needs of the healthcare community with which they work.


  Professor Feehally is Professor of Renal Medicine at the University of Leicester and Consultant Nephrologist at University Hospitals of Leicester NHS Trust. Professor Feehally is President of the Renal Association and chair of the national Renal Information Exchange Group. The Renal Association is the professional society of nephrologists and renal scientists in the UK.

  The Renal Information Exchange Group [RIXG] represents the whole renal community and includes representatives from professional and patient groups. Members include the Renal Association, British Renal Society, British Transplantation Society, Scottish Renal Association, National Kidney Federation, and Kidney Research UK. RIXG works to maximise opportunities for the renal community to influence the new information and knowledge environment in the NHS. RIXG adopted the Renal Information Strategy developed as a companion to the National Service Framework for Renal Services for England.

  The renal community is among the most IT literate in the NHS. For example:

    —    Many kidney units have used electronic clinical information systems in routine clinical care for more than twenty five years.

    —    There are national databases of patients with established kidney failure treated by dialysis or kidney transplant [Renal Association UK Renal Registry and UK Transplant] which are of proven value for secondary uses including audit and health planning, and these continue to be enhanced.

    —    A renal specialist library has been developed within the National Electronic Library for Health

    —    The renal community through RIXG has been innovative in developing the opportunities of electronic systems for patient benefit. Uniquely in the NHS it has developed RenalPatientView, which allows patients to have direct web-based access to their personal clinical information held on their kidney unit clinical system. This award winning initiative [supported by Department of Health funding] has been warmly welcomed by professionals and has strong endorsement from patients. It has been developed independently of Connecting for Health.

  The principles behind the introduction of electronic patient records currently envisaged as the National Care Record Service and the National Data Spine are strongly endorsed by RIXG.


  In this submission we respond specifically to the topics raised by the Health Committee.

1.   What patient information will be held on the new local and national electronic record systems?

  1.1  The system for the development of National Datasets which are to be held on the National Spine is sound, and has good clinical engagement. Members of the renal community have dedicated time and energy to work with the Information Centre to produce the National Renal Dataset, which is now awaiting Information Standards Board approval.

  1.2  As we understand there is still organisational debate about the extent of data to be held locally or nationally on the spine.

  1.3  Information held must be sufficient for the care record to be meaningful in clinical practice throughout care pathways which traverse traditional boundaries between primary, secondary, and tertiary care. Datasets including the results of all relevant laboratory investigations must be supported by clinical information less dependent on numerical data entry, such as imaging, clinical letters, information on past and present medication, and data on previous major health events.

  1.4  If the system is to be launched with a minimal dataset, technical and organizational solutions must allow for future extensive expansion of datasets, the content of which cannot necessarily now be predicted.

  1.5  Many renal centres have well-developed decision support systems that should not be lost by the introduction of generic less flexible systems. It is unclear whether the proposed Lorenzo solution will be able to offer the same level of sophistication on which we have come to rely.

2.   May patients prevent their personal data being placed on systems?

  2.1  Personal autonomy in withholding data does not make sense for individual healthcare which is likely to be compromised. Health professionals would need to make decisions with incomplete data, and opportunities for error would increase.

  2.2  It is our experience that patients with chronic disease such as chronic kidney disease do not wish to withhold data about their health; they recognise from personal experience the risks to their healthcare of incomplete availability of data to health professionals. One local health community has recently integrated its information systems for the care of people with long term conditions [independently of Connecting for Health] ; no patient has chosen to opt out.

  2.3  Data will also have important uses other than direct clinical care including healthcare planning, audit and clinical research. Such data are usually pseudonymised. Such work will be compromised by incomplete data. The scope of "personal autonomy" needs to be judged against a national "greater good" which in our opinion can be achieved with appropriate safeguards.

  2.4  Patients should have personal access to most aspects of their own health records. The introduction of RenalPatientView demonstrates that this can be secure and appreciated.

3.   Who will have access to locally and nationally held information and under what circumstances?

  3.1  Access should be for anyone involved in the clinical care of a patient. By seeking healthcare, the patient is de facto approving that the involved health professional has access to relevant personal health information, just as is now the case with paper records. No health professional should restrict access to other health professionals to clinical data they hold.

  3.2  While individuals from time to time raise concerns about inappropriate access to personal information, this must be understood in the context of the plethora of problems which arise when incomplete health information is available, especially during acute illness. Such problems can be life threatening, for example incomplete information about allergies to medications, or inaccessibility of previous X-rays to allow informed comparisons.

  3.2  Such problems arise much more commonly for patients with chronic disease [such as kidney disease] who are often involved with a number of specialist clinics in different hospitals as well as their primary care team. Lack of immediate access to records is a common cause of wasted time, substandard care, and risk. These problems are self-evidently the issues which NHS Care Records Service and the National Data Spine are designed to overcome. The plan is significantly weakened if patients can opt out.

  3.3  If a system is chosen which allows patient opt out, patients must be made aware of the risks they are taking.

  3.4  Access to patient identifiable data for secondary uses is appropriately controlled by the Patient Information Advisory Group.

4.   Can patient confidentiality be adequately protected?

  4.1  We accept it may be impossible to support a system which provides absolute guarantees of confidentiality in every circumstance—we presume a determined hacker can always succeed. Absolute confidentiality would probably paralyse the system as a real time support of healthcare. But it is our view that sufficient confidentiality can be provided in a pragmatic way.

  4.2  It is important that the issues related to confidentiality are clear to all NHS staff. There are examples of informatics staff tying the hands of clinical staff by restricting access to vital data on spurious grounds.

  4.3  In RenalPatientView we have provided web-based access to personal clinical information held by the NHS with the level of security afforded for example in personal on-line banking. This is workable and has satisfied the Data Protection Act, the concerns of Caldicott Guardians, and patient groups.

5.   How can and should data held on the new systems be used for purposes other than the delivery of care eg clinical research?

  5.1  While the primary goal of the new systems is improvement in the quality of direct clinical care, secondary uses of data are of great strategic importance:

    —    providing data for needs prediction and healthcare planning;

    —    enabling national comparative audit, and using that audit as the basis for cycles of quality improvement; and

    —    enabling clinical research which may have low cost and high product value if data are already captured and appropriately managed.

  5.2  The Renal Association's UK Renal Registry is a powerful example of a secondary use of data which is of proven benefit. It collects and analyses data on all patients with established kidney failure in the UK. It produces annual audit and outcome data which are widely used by kidney units and commissioners. Its systems and methods are also internationally respected.

  5.3  The introduction of the National Data Spine must not compromise data flows to the Renal Registry, nor hinder opportunities for data analysis and dissemination. The necessary sequences of data collection and validation are yet to be established to the satisfaction of clinical and renal informatics staff.

  5.4  Opportunities for patients to "opt out" of data collection crucially weaken the value of such secondary uses of data to the detriment of the whole NHS. The coherent and comprehensive coverage of the NHS means that data collection through the National Data Spine and its proper analysis make the NHS uniquely placed among world health systems to inform its own improvement, but only if datasets are complete.

  5.5  In our view "the greater good" outweighs the autonomy of the individual in this setting.

6.   Why is current progress on the development of the NHS Care Records Service and the National Data Spine and delivery of the new systems up to two years behind schedule?

  We have no insight into the internal workings of Connecting for Health but we offer an informed outsider's observations.

6.1  Flawed model

  The chosen developmental model with a small number of Local Service Providers developing regional systems in parallel seems to us flawed:

    —    It has prevented learning from shared experience.

    —    It has not visibly created energy by competition as was perhaps intended.

    —    It has meant huge investment without any "proof of concept".

    —    It has provided no "quick wins' to assure a sceptical healthcare community that the "grand plan' would ever deliver benefit

    —    It risks the possibility that issues of commercial confidentiality can compromise some of the benefits which might have been envisaged

    —    The interactions of a number of organisations appear necessary for progress to be made, but their respective roles, responsibilities and lines of command are to us opaque: as well as Connecting for Health and the LSPs, these include the Department of Health, the Information Centre, and the Secondary Users Service.

6.2  Changing leadership

  Identified leadership of Connecting for Health within the higher echelons of the NHS and the Department of Health has rotated with disconcerting frequency. To the outsider this suggests recognition of the problems, but uncertainty about the solutions.

6.3  Lack of clinical consultation

  From the beginning there has been a lack of clinical engagement.

  RIXG, speaking for the whole renal community, itself an unusually IT-literate part of the NHS, has been unable to open any channels of communication with Connecting for Health. Connecting for Health has never come to us to ask about the functionality of our present systems [which must at very least be maintained if not improved in the future] or to enquire about specific insights we might have. This is in spite of the fact that this was highlighted as a necessity in the Renal Information Strategy and in LSP business proposals.

6.4  Underestimate of complexity

  Lacking specific interaction, the renal community can only rely on the public stance of Connecting for Health. To our perception this is consistently overoptimistic, assuming that technical advances will overcome very large system-related challenges.

  Our scepticism when expressed has regrettably been cast as Luddite, or as a lack of confidence in the technical innovations which we do not understand. The possibility that we might have informed criticism based on 25 years of using electronic care systems in the NHS should be taken seriously.

6.5  Existing systems

  6.5.1  The renal community among others has highly effective clinical information systems refined for our purposes and integral to clinical care. From the beginning we were told that the NHS Care Records Service and the National Data Spine would replace our systems, although Connecting for Health has never asked us what functionality it is they are replacing.

  6.5.2  Specialist clinical software suppliers have worked with clinicians over many years and understand well the needs of the healthcare community with which they work. The Connecting for Health strategy has appeared to threaten their existence and this could lose much expertise of value to the health community.

  6.5.3  Recently we are told there has been recognition that existing systems cannot all be replaced, and that alternative mechanisms are needed for integrating them. From our perspective this is encouraging, but it is symptomatic of the communication issues that the renal community has had to seek out this change of strategy, it has not been communicated to us.

6.6  Focus on making local health communities work—National Service Frameworks and local networks

  6.6.1  Clinical computing developed in the UK through the emergence of highly specific systems in specialist areas, for example renal care and diabetes care. The requirement now is for the overlapping information requirements of these disciplines to be fully defined and extended into the community setting. But this needs to be achieved without loss of the specific and clinically valuable functionality which has evolved in these systems over many years.

  6.6.2  The specialist nature of clinical provision is acknowledged in the development of the National Service Frameworks [NSF]. In the case of renal services a separate piece of work compiled an available Renal Information Strategy to support and enable the main features of the Renal NSF. The Information Strategy can serve to "ground" the informatics developments in clinical activities, but we see no evidence that the Information Strategy is being used as the basis of any Connecting for Health initiatives.

  6.6.3  The goal of nationally available clinical information is attractive—ie ensuring that wherever an individual falls ill or has an accident their health records will be available. But the great majority of health gain from the NHS Care Records Service will be in local health communities. The largest early gains will be in the care of people with chronic disease.

  6.6.4  This is exemplified for patients with chronic kidney disease [CKD], a common condition affecting 5% of the adult population, many of whom have coincident cardiovascular disease. In early CKD most care is delivered in the community with a focus on cardiovascular risk management. As kidney disease advances the input of the specialist kidney team gradually increases. By the time there is advanced CKD requiring dialysis treatment or a kidney transplant much of the care is based in the kidney unit. This later stage is characterized by multiple specialist inputs, frequent attendances at multiple healthcare settings, and complex medicines management.

  6.6.5  Care pathways are being developed which work across traditional interfaces between primary, secondary and tertiary care for chronic disease management. For CKD these pathways have the potential to delay or prevent progression to established renal failure requiring treatment by dialysis or transplant, which is complex and high, cost [presently consuming ~2% of the NHS budget to treat ~40,000 people]. It will also be possible to minimize the number of patients previously unknown to kidney units who require urgent dialysis; such patients, colloquially known as "crash landers" have a significantly worse outcome than those with prior care from the specialist team.

  6.6.6  Information flows which break down "barriers' and make an electronic care record available across care pathways, will therefore provide major health gains. Seamless IT is integral to modern delivery of chronic disease management as patients move from primary to secondary to tertiary care. The healthcare services which patients access may be in different LSP "clusters".

  6.6.7  Clinical staff need to understand the Connecting for Health strategy. Quicker wins, such as could have been delivered in chronic disease management, would have been vital in winning the confidence of the clinical community. They can still be.

6.7  UK perspective

  The limitation of Connecting for Health to England is unhelpful. Health care occurs across the UK. Secondary purpose data use as for example in the UK Renal Registry is based on UK wide data allowing nationwide benchmarking. Distinct IT strategies in different parts of the UK add complexity, consume energy, and offer no health gain.

Professor John Feehally,

President, Renal Association and

Chair, Renal Information Exchange Group

March 2007

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Prepared 25 April 2007