Select Committee on Health Written Evidence


Evidence submitted by the British Medical Association (EPR 40)

EXECUTIVE SUMMARY

    —  The BMA supports the creation of a summary record. Patients should play a central role in deciding what information, if any, is shared and checking for accuracy. It is the BMA's view that explicit consent should be obtained and patients must have the right to prevent their information being uploaded or shared. It is important that an incremental approach is adopted and that experience of sharing summary care information should be accumulated before detailed care records are shared. Patients must have the right to prevent the sharing of their detailed care records beyond organisational boundaries.

    —  Information governance presents a significant challenge. There needs to be clarity about how the number of alerts will be managed by Caldicott Guardians, what training and resources will be in place to support Caldicott Guardians, the penalties which will be in place if the system is abused, and about how smart cards can be better managed in busy environments.

    —  The BMA welcomes the Secondary Uses Service, in principle, and believes that this could bring major benefits to health and healthcare. There are, however, a number of areas which remain unclear as indicated in the response.

    —  Many of the problems encountered by the programme have been caused by stakeholders, clinicians and patients not being consulted on developments. Following the National Audit Office report, this has started to be addressed but there is still a sense, at times, of proposals being signed off without adequate consultation and an element of secrecy around developments. There needs to be greater transparency and openness with both clinicians and patients about developments and engagement, at every stage, of healthcare professionals who will use the systems.

    —  Connecting for Health needs to be clearer about its strategy. Many areas remain vague or unanswered including UK integration, who beyond the NHS will have access and how the detailed care record will be implemented. In addition, the workload implications of implementation have not been identified and could be a major rate limiting step for further roll out if not resourced. Connecting for Health needs to work with stakeholders, clinicians and patients to address these unanswered questions.

    —  The main purpose of an electronic patient care record is to improve patient care. The needs of patients must remain central to these discussions and we hope that the early adopter phase will provide the opportunity to test out some of the theory around the National Care Records Service (NCRS) and find out what patients really require. Further roll out must not go ahead until lessons have been learnt from the evaluation of the early adopters.

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 new systems

  1.  The BMA supports the creation of a summary care record on the national electronic record system. The current hybrid system of paper and electronic records is far from perfect and we can see the benefits that greater sharing of healthcare information could bring to everyday working practices to improve patient care.

  2.  It is the BMA's view that it is for patients to decide, in discussion with a healthcare professional where appropriate, the extent to which their clinical information is placed on electronic systems. It is vital that patients are properly informed about any changes and understand the implications of both sharing and withholding information. The BMA's policy is for explicit consent to be obtained before any healthcare information is uploaded onto the system. This will ensure that patients are properly informed and have the opportunity to check their record for potential sensitivities and accuracy prior to any upload. This should not be a one off event; following each consultation, patients should have the opportunity to consider the information which could be shared with others involved in their care. Consideration needs to given to supporting vulnerable groups such as the frail elderly in this process.

  3.  The systems should support this process by highlighting the clinical information, which could be added to the summary care record. The BMA welcomes the involvement of clinicians in developing standards to support this process. It seems sensible that the summary record should be comprised of basic information such as medications, adverse reactions, allergies, major diagnoses and test results, provided that the patient is in agreement. The early adopters will play a key role in testing this with clinicians and patients. We hope that the independent evaluation will provide essential feedback on patients' decisions to influence future developments and that the deployment timetable allows for appropriate evaluation.

  4.  If information is to be shared more widely it will become increasingly important that information in patient records is meaningful to the viewer. A prerequisite is that all records, local and shared are accurate. GP practices are being accredited before any information is uploaded and patients will play an important role in checking their summary record before the initial upload. There needs to be an ongoing commitment to ensure that records remain accurate. There must be investment in training clinicians and staff to ensure that data is entered appropriately. Electronic records are dynamic and introduce a new responsibility of data husbandry that needs to be resourced. Potential viewers of the NHS Care Records Service may need to be trained to understand and interpret the context of such records.

  5.  Patients must have the right to prevent their healthcare information being uploaded onto shared systems. Some patients will want reassurance that their healthcare record will not be shared beyond their GP practice or the organisation in which it was created. We would not want patients' access to health care services unreasonably compromised by making this decision. Failure to provide this option could result in patients withholding healthcare information adversely affecting clinicians' ability to provide proper treatment and increasing patient safety risks. Trust is critical to the success of the NHS Care Records Service.

  6.  With regard to detailed care records, patients should have the option to prevent their information being shared beyond organisational boundaries. If clinical data is entered onto the GP system, patients must be able to prevent this information being shared beyond the practice team. The BMA also believes that patients must have the option of sharing their summary care information on a national level without sharing their detailed care information at a regional level. Many patients will be happy to share basic information so that it is available in an emergency but may be uncomfortable about sharing their detailed care record outside organisations, which may include embarrassing and/or sensitive information that would not have any impact during an emergency health episode. The BMA also believes that there must be an incremental approach and experience should be accumulated in sharing summary care information before detailed care records are shared with other databases.

  7.  The BMA accepts that it is necessary for patients' demographic details to be held on a centralised system in order to deliver care, in the same way that NHS patients could not opt out of being recorded on the Exeter system. There may be situations, for example if a patient is in a witness protection programme, or otherwise hiding from violence, when a patient's demographics may be hidden or "flagged sensitive". There needs to be greater clarity about how these patients, who are often vulnerable, will be informed that this option exists, how their health information held on the spine can be accessed and how being flagged sensitive will impact on their use of the health service. For example, will they be able to use GP2GP transfer, Choose and Book and the Electronic Transfer of Prescriptions (ETP) services? It needs to be clear that personal sensitive information will never be held on the Personal Demographic System (PDS). We would also like to see clearer guidance about the consequences of trawling through PDS without reason.

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

  8.  The BMA supports the concepts of legitimate relationships and role based access to control who has access to what information. It is the BMA view that it is important that the system is workable. Access controls must not be so stringent that they delay clinicians providing treatment to patients.

  9.  Patients should have control over who has access to their records. Patients should have the choice of:

    (a)  Having no clinical information uploaded onto the national system provided that they understand that limiting the information that will be immediately available via the spine, even in an emergency, may be to their detriment;

    (b)  Having a hidden summary care record so that it can only be accessed with a patient's explicit consent or in an emergency situation;

    (c)  Having a summary care record so that it can be accessed by those directly involved in a patient's care but restrict the sharing of their detailed care record to the organisation it was created in;

    (d)  Sharing their summary and detailed care record nationally and regionally, respectively;

    (e)  Placing sensitive information in sealed or "sealed and locked" envelopes to restrict sharing. The BMA supports the concept of sealed envelopes but is concerned about delays in their delivery and the practicalities of their implementation.

  10.  The BMA supports developments such as Healthspace, which enable patients to have greater access to their own records. We support developments which enable patients to be more involved and potentially add to their own records at any time. The BMA hopes that this will allow patients to include advanced directives and views on organ donation on their record. Urgent consideration needs to be given to children and arrangements for accessing Healthspace by "Gillick competent" children.

  11.  The BMA recognises that in some circumstances it may be beneficial for some groups outside the NHS who provide care, to access the summary care record, including dentists, opticians, community pharmacists and social care workers. In such circumstances access must only be possible if a patient has chosen to have a summary record and has provided explicit consent for each of such groups to have access to the summary record. Patients and clinicians may feel concerned about this and there needs to be consultation with stakeholders about the extent to which records are shared beyond the immediate NHS.

  12.  As part of NHS system reform, private providers will increasingly provide care to NHS patients. Private providers should be subject to the same access controls and should be responsible for their own local detailed records. There needs to be clarification about what happens to the record when a private provider ceases to deliver NHS services. Arrangements should be in place for the local detailed record to remain part of the of the patient's record.

  13.  The primary function of the NHS Care Records Service is to provide care for patients and the BMA would strongly oppose any plans to allow other government agencies access to the NHS Care Records Service, for example, social services, the police and the Home Office. There are other more appropriate routes for information sharing, when necessary, with these agencies. The purpose of the NHS Care Records Service is to provide care to patients and allowing other agencies access would undermine trust in the system and the doctor/patient relationship. There must be strict penalties for anyone who attempts to inappropriately access the NHS Care Records Service.

  14.  The BMA is concerned that there appears to be little progress in supporting patients who live close to the UK home country borders. The need to ensure that systems are integrated across the UK was raised by the BMA at the outset of the programme. Thousands of patients live close to the borders and there needs to be a mechanism in place to ensure that if a patient receives care across the border, clinicians can have access to necessary information and share healthcare information so that they do not receive sub-standard care. There are also an estimated quarter of a million people who migrate between the 4 nations and many patients who receive treatment as temporary residents. Having a nationally available summary care record with local detailed records supports by interoperable clinical messaging with support this need.

Whether patient confidentiality can be adequately protected

  15.  The protection of patient data falls into two categories: (i) the technical security and (ii) information governance. The BMA believes that the technical security arrangements provide a sound basis requiring only modest changes to provide the technical support required to meet all of the confidentiality issues we have identified. The security framework does not provide mechanisms that allow the particular issues that relate to the protection of the records of NHS staff to be addressed. It is the information governance and "people" side of security, which in many ways, presents the greater challenge.

  16.  However secure the system, there is always a risk to confidentiality when increasing the number of people who have access to the system. Some actions which put the data at risk may be accidental such as leaving smart cards in the system. Other actions may be to speed up processes; there have already been cases of smart card sharing due to the time it takes to log into systems, for example at an acute hospital in South Warwickshire, or giving receptionists a clinician role in Choose and Book. There will also be occasions when staff access records for inappropriate reasons.

  17.  These issues are not new but become a greater challenge with a centralised system. Whilst an alert system may detect inappropriate access, it will only become apparent after the event. The BMA is yet to receive clarification about how the number of alerts will be managed by Caldicott Guardians and is concerned that illegitimate access may go undetected or uninvestigated.

  18.  The BMA has already raised concerns with Connecting for Health over the funding and resourcing of Caldicott Guardians and privacy officers. The BMA welcomes the establishment of the Caldicott Guardian Council, and the recent publication of The Caldicott Guardian Manual 2006, but is concerned that despite these efforts, training and resources will not be available to ensure that Caldicott Guardians and privacy officers will be able to fulfil their new extended responsibilities under the NHS Care Records Service. Given that the government is placing emphasis on safeguards that these individuals will police, as a means of reassuring the public and the profession that they can have trust in the system, it is vital that these resources are planned and made available.

  19.  Preventing access in the first place is crucial. It must be made very clear that inappropriate access will result in penalties. There also need to be very clear information governance guidelines in place to support the culture change, which is necessary to implement Electronic Patient Records.

  20.  The security of any system can never be guaranteed. It is therefore for patients to weigh up the benefits and the disadvantages of the new system and consider to what extent they wish to be involved. For this reason, a well balanced and unbiased public information campaign is extremely important.

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

  21.  The BMA welcome the Secondary Uses Services (SUS), in principle, as one of the key ways in which the NHS Care Records Service could bring major benefits to health and healthcare. The existence of accurate, well coded and linked non-identifiable data could revolutionise activities such as population needs assessment, public health surveillance, drug monitoring and epidemiological research. This could impact in a positive way on all clinicians and patients in the future. There are, however, a number of unanswered questions surrounding SUS.

  22.  Data must be kept secure and confidential. It must be clear where, how and at what point the data is anonymised or pseudo-anonymised and if the data is held at any point in an identifiable form what security will exist to protect that data and ensure that only those with a legitimate relationship have access to the data. Secondary uses should use anonymised or pseudo-anonymised data and other privacy enhancing techniques (PETs) wherever possible.

  23.  It must be made clear to patients that their data will be used for secondary uses. The Department of Health must be open and transparent about the use of the data. There needs to be clarity about who will be allowed access including non-NHS organisations and commercial companies. Will any organisations be charged to access information and if so, what will happen to this payment? Will it include data from private providers and ISTCs? Will patients be able to request that their data not be used for these purposes, or put limits on the types of secondary uses that their data are used for? Other areas which need clarification are the legal status of the SUS and the relationship of the Secondary Uses to the European directive, which excludes research.

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 two years behind schedule

  24.  The original timescales were extremely optimistic. Delays were inevitable with a programme of this size. Lessons should have been learnt from previous NHS IT programmes, as detailed in the Audit Commission's report of August 2000. More achievable targets should have been set from the start. Providing clinical data to clinicians in out of hours settings, as has been achieved in Scotland, could have been a sensible first step. This would have engaged and gained the confidence of local clinicians before progressing in a more incremental way.

  25.  At the outset, there was no clarity about what the summary care record would look like and what it would deliver. There have been changes in specification and it has been difficult to keep track of the latest plans. A clearer strategy and understanding of what was required from the start was required.

  26.  The delays are partly due to wholesale replacement of systems rather than working with and integrating existing systems. Systems, particularly in primary care, were and are highly developed and have evolved over a number of decades and this enthusiasm and knowledge and expertise should have been drawn upon by the programme, rather than largely starting from scratch. Following pressure from clinicians the GP Systems of Choice agreement with accredited interoperability will hopefully help address this in primary care. Recent announcements regarding a changed emphasis towards an approved catalogue of suppliers committed to interoperability is also welcomed by the BMA.

  27.  Not all systems have been delayed. Some systems including QMAS, EPS and GP2GP in primary care and PACS systems in secondary care have been delivered successfully. The reasons for these successes should be understood and disseminated.

  28.  The BMA is concerned about delays in delivering new systems in secondary care. Planning blight and delays in delivery are forcing Trusts to make do with systems which are in urgent need of replacing or implementing interim solutions at extra cost and disruption. Staff need training on interim solutions, which takes time away from caring for patients. We suspect that timescales were put in place to meet political targets, which leave Trusts unsure of whether to wait for the promised systems or go ahead with their original deployment plans.

  29.  Some of the delays could have been avoided if there had been greater engagement of patients and healthcare professionals at the outset of the programme. Developments have been dictated from the centre and representative and accountable clinicians have felt disengaged. Representatives from all grades of doctors need to be engaged including junior doctors and medical students. A greater involvement of clinicians and stakeholders could have highlighted potential problems, at an earlier stage and helped ensure that systems are fit for purpose. Instead clinicians are concerned that systems will offer less functionality than those they are currently using. If clinicians and patients were engaged they could have put pressure on getting systems implemented and worked with Connecting for Health. For many clinicians their first encounter of change was Choose and Book or coding to deliver payment by results, which only served to disengage them. Changes are now happening as a result of greater engagement for example ensuring that patients can refuse to have a summary care record and bringing forward the implementation of Healthspace so that patients can check their records.

  30.  Messages from Connecting for Health have not always been aligned with what has been happening at a local level. The National Local Ownership Programme has recently been launched and may begin to address this. Organisational changes are required to ensure that systems are used as they are intended and this has not happened. This was particularly highlighted by the implementation of the Choose and Book system. Lessons must also be learnt from when things have not gone smoothly and this will help move the focus from central policy to clinical integration.

  31.  The financial difficulties within the NHS will have also contributed to the delays. Spending on Information Technology will not be a priority for Trusts and PCTS. Ring-fenced funding could have ensured that money was spent on implementation.

Dr Vivienne Nathanson

British Medical Association

16 March 2007





 
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