Select Committee on Health Written Evidence


Evidence submitted by the NHS Alliance (EPR 19)

EXECUTIVE SUMMARY

    —  Patients should have access to their full primary care record.

    —  The patient should retain control of the data.

    —  The personal health record should be designed to enable patients to understand the contents and thus form the basis for:

    (a)  empowerment;

    (b)  shared decision-making;

    (c)  more involvement in their care and management; and

    (d)  the ability to integrate often fragmented care.

    —  Access to records should also be seen as a way of improving the accuracy of the record.

    —  We support the approach to confidentiality and authentication taken by NHS Connecting for Health, although we recognize inherent risks in the Spine design.

    —  We support the current developments towards a more cooperative approach with suppliers. This is likely to build on existing energy and innovation, rather than stifle it.

1.  INTRODUCTION

  1.1  The NHS Alliance understands that the Health Select Committee seeks opinion on the current NHS Connecting for Health (CfH) plans for the Electronic Patient Record (EPR). We shall respond to those interests.

  1.2  In addition, however, we should like to draw the committee's attention to other approaches to the EPR, particularly with regard to:

    —  access to the record by patients

    —  sharing the record between primary and secondary care.

  1.3  It has become clear that the original vision of a unitary system designed from scratch has had to give way to a more polyglot version where CfH works alongside existing providers. This has enabled other solutions to common problems and these need to be taken into account when considering the EPR process.

2.   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

  2.1  NHS Alliance understands that CfH plans for a Summary Care Record to be available in 2008. This will contain the patient's problem list, allergies, immunisations and a medication list. Censored from both the problem and medication lists will be any mental health or sexual health information.

  2.2  We feel that this is a significant step forward in patient safety. To have this information available wherever the patient presents to the NHS will make life easier and safer for staff and the public.

  2.3  However, the Alliance is concerned about the limitations that this arrangement imposes. In particular, eliminating sexual and mental health history means that it will be difficult for clinicians to rely on the data they see: the patient may be taking other drugs not listed. There may be other conditions that need to be taken into account. This partial data set may be more risky in some circumstances than no data at all.

  2.4  We would recommend that:

    —  the patient's full record is made available,

    —  that the patient retains control of the data (Chapter 1 Section 13 NHS Plan 200 "Each patient will have a record... to which the patient will hold the key")

  2.5  This is available through at least two systems in the UK at the moment: the full primary care record is under the patient's control and they can show it to clinicians at will. In one system, because the record is available online, it can be shown to a clinician by the patient wherever there is access to a web-browser: in outpatients, in A+E or abroad. In the other system, full record access is via card with a USB. Whatever system is in use, sealed envelopes will be needed: patients can place in these data that they do not want clinicians to see. These are not available at the moment.

  2.6  So far as patients preventing their personal data being placed on the CfH Spine, we understand that this has now been agreed in principle. It is also clear to the NHS Alliance that, if a patient does insist on their data being kept off the Spine, their health care is likely to suffer to some extent, and the patient will need to understand that.

  2.7  The Alliance also understands that, in order for patients to be able to decide with their GPs whether information should or should not go on the Spine, there will need to be a conversation between the GP and the patient. The Alliance is concerned that this will lead to an unacceptable workload for GPs. If the process could be automated, this would make life easier for all concerned. There are now systems that can make this possible.

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

3.1  Who will have access? Clinicians

  3.1.1  The NHS Alliance feels confident that the current arrangements proposed by CfH are safe, on the whole. That is, within the limitations of human error, patient data will be held securely and that access will be offered only to those who need it at the time they need it.

  3.1.2  The limitations of human error include the consequences of clinicians leaving their identity cards in situ, enabling others to gain access inappropriately; clinicians leaving computer screens on and unattended with their identity cards in situ. This will have to be tackled by education and sanctions.

  3.1.3  One possible source of inappropriate access against which it is difficult to guard is organized crime. The more centralized the storing of patient records, the more of a prize for organized crime—and the more data could be stolen at one time.

  3.1.4  Again, the NHS Alliance would recommend that:

    —  the patient's full record is made available;

    —  that the patient retains control of the data;

    —  that patients have access to the audit data trial and can see who has or has not accessed their record;

    —  patients should also be informed when their sealed evelopes have been opened. This is not planned at present and is a SERIOUS omission; and

    —  it is also possible that patients could be alerted by e-mail when their record has been accessed. This happens in systems in the USA.

  In this way, the patient always knows who has access and who does not.

  3.1.5  The main disadvantage of this approach is the difficulties posed by access when the patient is unconscious. Those patients who know that unconsciousness is possible could share their authentication details with someone close to them to use in an emergency: proactive consent. For the unexpected situation, the Spine arrangement would be the best.

  3.1.6  Because there are advantages and disadvantages to the various access systems available at the moment, the NHS Alliance recommends that clinicians and patients be able to move between the different systems to maximize benefit to the patient. There should be an arrangement whereby the clinician can see both the summary record through the Spine as well as working with the patient to see their full GP record when needed. The advantage of the latter is that there would be access to all electronic investigation results, all scanned letters, all recent GP consultations.

3.2  Who will have access? Patients

  Some of the comments below stem from experience with alternative systems currently available that allow patients access to their full GP record.

  3.2.1  The NHS Alliance recommends that patients should have access to their full GP record at will. There needs to be safeguards in place in respect of complex issues such as third party information, access to children's records by parents and data that has been generated and entered into the record but has not been processed by the responsible clinician. In addition, research suggests that, although patients understand most of what they read, it would be important that technical data is linked with information for the patient.

  3.2.2  Systems available now link raw data in the record with information for the patient. For instance, a problem title such as "asthma" can be linked with accredited patient-centred information and health advice about the topic. It can also be linked with patient-facing NICE guidelines, national patient groups and also with decision aids which have been shown to help patients make real choices in the management of their care.

  3.2.3  In addition, it is possible to link the record with reminders for better care. For instance, if a patient is overdue for a blood pressure check or smoking review, they can be reminded when they look at their record.

  3.2.4  Research suggests that the benefit of full record access includes:

    —  It enhances communication between clinician and patient;

    —  It increases the onus on the clinician to tell the truth;

    —  It increases patient satisfaction;

    —  It enables patients to correct data errors, the commonest ones being demographic data, but the errors can also be about clinical process and outcomes;

    —  Patients feel better informed and almost always reassured, even when they read bad news;

    —  Patients feel they understand about 70% of what they read;

    —  It appears to improve compliance and support health education messages, such as smoking quit rates; and

    —  It is likely to improve self-care.

  3.2.5  In this way, access to their own full health record can act, for the patient, as:

    —  an aide-memoire;

    —  a teaching tool;

    —  a stimulus and personal trainer to better health;

    —  a method of empowering patients to take more part, if they choose, in shared decision-making; and

    —  to coordinate often fragmented clinical care

  It is potentially a transformative technology.

3.3  Who will have access? Carers.

  3.3.1  So long as the patient has given their informed consent, people close to them can access their records also.

  3.3.2  This offers significant benefits. For instance, as has already been shown with current experience, carers:

    —  can coordinate fragmented care;

    —  have a much clearer idea about what is happening to the patient;

    —  can inform the patient about their care;

    —  can be more effective advocates;

    —  can monitor progress from abroad; and

    —  can transform the quality of care for patients in care homes and units for severely disabled.

  3.3.2 Again, this benefit is significantly enhanced if carers have access to the full record.

3.4  Access under what circumstances?

  3.4.1  To maximize benefit, clinicians and patients and their representatives should be able to have access in a range of circumstances

  3.4.2  Clinicians should be able to have access both in the presence of the patient, conscious or unconscious. In addition, it should be possible to have access, with the patient's consent, to their record when the patient is not there, in some circumstances. For instance anonymised, for research, information governance and clinical governance and for checking data.

  3.4.3  Patients should be able to see their records in any circumstance. The simplest approach is online. However, this does currently exclude a substantial minority of people, particularly perhaps those who would benefit most from access: those with long-term and/or co-morbid conditions, and the elderly.

  3.4.4  For this reason, the NHS Alliance suggests that it may be important, for the next few years, to enable access through other means, for instance through kiosks in GP waiting rooms or in libraries or on portable storage devices, with adequate facilities for confidentiality.

4.   Whether patient confidentiality can be adequately protected

  4.1  As described above, and subject to the caveats expressed above, the NHS Alliance feels that patient confidentiality is well served by the current CfH programme. It also feels that over zealous confidentiality can act against the patients' best interests,

  4.2  Authentication issues at this stage still need clarification, but they will soon be finalised and will be acceptable to the information commissioner and practical to implement.

  4.3  Security of the record itself is also well-protected by CfH systems, as the NHS Alliance understands it.

  4.4  The other systems currently available are in the same position.

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

  5.1  The NHS Alliance endorses the idea that clinicians should be able to use the record for research. However, the data must be anonymised and, if not, the patient must give informed consent.

6.   Current progress on the development of the NHS Care Record Service and the National Data Spine and why delivery of the new systems is up to two years behind schedule

  6.1  The NHS Alliance feels that the CfH will deliver what is needed in time but there have been unacceptable delays. The current delays have caused problems in themselves and have had a morale sapping effect on CfH and how it is perceived

  6.2 We  feel that the reasons for the delay are multiple, including:

    —  a dogged refusal for some time to include existing providers who were and are offering good service to the NHS;

    —  persistence in a top-down approach that failed to use existing expertise; and

    —  inadequate clinician and public and patient engagement.

  6.3  Most of these problems are slowly being addressed. In our view, harnessing existing expertise and using systems that we know work well and have the confidence of users will be the most effective way forward, For instance, the system that enables patient record access offers more functionality than HealthSpace at a small fraction of the cost.

Dr Brian Fisher, GP

PPI Lead for the NHS Alliance

Lead for the Record Access Collaborative (funded by EMIS)

Co-director of PAERS, a company enabling patients to see their electronic health record

15 March 2007





 
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