Select Committee on Health Written Evidence


Evidence submitted by James Stuart (EPR 02)

1.  EXECUTIVE SUMMARY

  1.1  This is written evidence to the Parliamentary Health Committee regarding the Electronic Patient Record (EPR) and its use. This evidence is original and has been compiled from in-depth working knowledge of changing patient requirements, NHS needs and government drivers.

  1.2  Why is EPR important? EPR is important because of:

    —  changing population demographics

    —  changing needs and requirements

    —  new procedures and medications

    —  finite resources

    —  the need to increase the delivery of care to patients

    —  the need to achieve consistently high levels of quality care

  1.3 This points to an ever increasingly complex healthcare system. The traditional paper based system, which has served its purpose well until now, will no longer be fit for purpose. On the grounds of patient safety and increases in patient care, as well as cost effectiveness, the paper based system will not be able to keep pace with the changes outlined. Therefore a new system that will allow increases in patient care and cost effectiveness should be investigated and introduced if found to be beneficial. This solution is likely to be EPR: a new method of information management using technology as a core business enabler.

  1.4  A full investigation will be required to assess the present information needs and future requirements. This investigation will be independent. It will produce a detailed plan of progression in order to advance the concept and reality of EPR for the benefit of patients and the future of healthcare in the UK.

  1.5  EPR will also give rise to a new generation of local, regional and national information analytics essential for prevention, care provision and disease control. Reference 3.4.

2.  INTRODUCTION

  2.1  Introduction of the EPR will be a major step forward in the enhancement of patient care and safety. If implemented and tracked properly, EPR can also generate significant and sustainable cost savings and productivity increases. It is this implementation, and overcoming the NHS cultural barrier of resistance to change, which will provide the greatest challenge. In order to avoid costly project overruns of the like that has been recently experienced, such barriers and other mistakes should be understood and appreciated. Safeguards will be put in place to avoid a re-occurrence of the mistakes of the past.

  2.2  This will require a high degree of planning and communication as well as the early identification, tracking and realisation of business benefits in order to provide the required enhancements in patient care and safety, and the cost savings / productivity increases.

  2.3  The early focus on patient care along with the early engagement with managers and stakeholders will be necessary to ensure the success of EPR as a properly designed and implemented programme of improvement.

  2.4  EPR will also allow the public and private sector combination of information to provide a full nationwide view of health and health trends. This can be utilised to drive health improvements for the benefit of the potential patients and at much lower cost to the NHS.

3.  ADDRESSING THE ISSUES

3.1  What patient information will be held on the new local and national electronic record systems, including whether patients may prevent their personal data being placed on systems?

  3.1.1  Patient information will have to be locally inputted. Decisions will have to be made on the viability of locally held Vs nationally held data. For ease of use and cost effectiveness the "hub and spoke" nationally centred model would be the most efficient. However, there may be a strong GP / PCT desire to retain control of patient data locally. This latter will decrease efficiency for out of locality treatment and for any necessary trend analysis.

  3.1.2  EPR should exist to ensure ease of use and the relative free flow of essential information. It should not exist to create further barriers and to increase cost.

  3.1.3  For security and access reasons, patient information will have to be tiered:

    Tier 1: contact details and unique identifier

    Tier 2: Outlying medical history

    Tier 3: Detailed medical history

  3.1.4  It may be that patients can be given the right to prevent their personal data being placed on systems. If this is undertaken, there must be relevant and easy to understand information regarding the advantages of EPR and the disadvantages of not being on the system, as well as allaying any security fears.

  3.1.5  Emphasis should be on full population inclusion. For the patient this should not be a matter of information management, rather a matter of enhanced care delivery and patient safety.

  3.1.6  EPR will also give the private sector the distinct opportunity to add to the available health records. This can only benefit overall patient care and the tracking of statistical trends to assess future need. In a world of changing demographics and finite resources, the assessment of the future need is likely to prove critical. Therefore, it is essential to gain a holistic view and not just a partial view.

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

  3.2.1  Access will be strictly controlled. Access will also be strictly audited. Information changes will be tracked. How information will be inputted and the quality of this information will have to be standardised to negate error and misunderstanding.

  3.2.2  Access to patient information will be based on need. For example, the need of a medical secretary will be different from the need of a GP and the need of a PCT. This is where access will be controlled.

  3.2.3  Doctors directly treating the patient will have full access to data. Those national agencies providing information and analysis, for example the NHS Information Centre and the Secondary Uses Service, will have access to anonymised data only. This data may or may not be encrypted.

3.3  Whether patient confidentiality can be adequately protected?

  3.3.1  All data—whether paper based or electronic—is at risk. These risks include unauthorised infringement. Risks also include loss, fire and spoiling of paper based records. They also include disposal of old records.

  3.3.2  No records of any format can ever be assumed to be 100% secure.

  3.3.3  However, with present mechanisms, there can be a high degree of surety regarding confidentiality, risk and disposal. These protective mechanisms are increasing in sophistication.

  3.3.4 Although there are objections over security, the underlying main objection to using e-information mechanisms is not necessarily security. It is more a matter of perception.

  3.3.5  Overall protective mechanisms can only be finalised following the decision on having either locally held data or nationally centred data. Some similarities exist between the two choices—for example, encryption and secure access—yet with some differences that have to be examined—for example, which type of data store to protect and the multiple access points into the data store.

  3.3.6  Data warehousing in general is a secure repository for data. This can also provide significant safeguards over traditional paper based records in terms of other security and backup, as well as physical space and the real time updating of records.

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

  3.4.1  The use of paper based records for purposes other than direct care can be both costly and unwieldy. As a result there is no clear national view of the nations health and future trends from the holistic public sector and the private sector. For example, a third of all hip replacement operations are conducted in the private sector. This is not included in the overall countrywide health statistics.

  3.4.2 E-data, updated in real time or on a daily basis, will provide access to a wealth of analysed information. This information can provide snapshots or general trends. These will prove essential in the planning of patient centric healthcare. In todays world this is important for health prevention and the out of hospital care agenda to increase relevant care delivery and reduce costs.

  3.4.3 Real time updating of e-data will also prove to be an essential component in combating any outbreak of disease. For example, in an extreme case, a H5N1 pandemic if the virus genetically jumps species to become highly pathogenic to humans. During the Sydney Olympic Games (2000) health information from the immediate population was updated every 4 hours in order to gain early warning of any infectious conditions.

3.5  Current progress on the development of the NHS Care Records Service and the National Data Spine and why delivery of the new systems is up to 2 years behind schedule?

  3.5.1  No comment can be made on the specific lateness of this particular project.

  3.5 2  However, from a significant level of public sector consultancy experience, there is a general observation that may be relevant. The observation is that the majority of public sector projects/programmes exceed budget and time. In general, the main reasons for this are:

    —  initial requirements are vague;

    —  requirements are prone to change from public sector managers or politicians following the design or implementation stage;

    —  there is little or no change control;

    —  there is little or no change management;

    —  there is little or no identification, tracking or realisation of benefits—the project is carried out because someone told them to do it. This is poor communication and management; and

    —  there is significant public sector cultural resistance to change.

  3.5.3  This latter point is wholly concerned with the amount of unfocused change there has been, typified by a lack of relevant communication to all levels of staff and a lack of realised benefits due to project overruns in both time and money.

  3.5.4  Only if these points are understood and successfully tackled will any future programme be successful in terms of the benefits delivered and costs incurred. The Health Committee have an opportunity to turn the tide of NHS implementations and ensure a successful outcome for EPR.

4.  RECOMMENDATIONS

  4.1  To engage in a proper and full scoping study in order to identify the advantages/disadvantages of EPR versus the advantages/disadvantages of non-EPR. This study should be conducted independently. It should have a specific timeline for completion and be formally presented to the committee. Only by this means can every member of the committee gain the high level view of the same information. Feedback should be incorporated into the study.

  4.2  Publish the scoping study and grant access to interested parties. This will begin the necessary dialogue and uncover barriers.

  4.3  If the decision is to progress with the process, the study should be used to begin the full and in-depth consultation with interested parties. This consultation will be for the purposes of engaging with the barriers at an early stage—and finding a way around the barriers—as well as to raise awareness/educate with respect to the benefits achievable—and then gain wider support.

  4.4  There should then be a final decision on data and information standardisation.

  4.4  This will be followed by a decision on the local or national data model.

  4.5  Followed by the decision on confidentiality measures and access.

  4.6  There should be a pilot project to assess on the ground impact as well as take account of any unforeseen difficulties.

  4.7  Lessons learned from 4.6 should be cascaded into an overall implementation plan for national EPR.

  4.8  The core benefits will have to be identified.

  4.9  A communication plan should be in place to keep all interested parties properly informed and to deal with barriers should they arise.

  4.10  To minimise the already extensive delays, progress should be agreed as a matter of urgency.

James Stuart

Health and Information Consultant

February 2007





 
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Prepared 25 April 2007