Select Committee on Health Written Evidence

Evidence submitted by Breakthrough Breast Cancer (EPR 32)


  1.1  Breakthrough welcomes this inquiry into the electronic patient record and its use. Our memorandum focuses on the kind of patient information that should be held on the electronic record systems; who should have access to such electronic information; patient confidentiality; and how the data held on the systems should be used for purposes other than the delivery of care.


  2.1  Breakthrough broadly welcomes the development of any system that will enhance breast cancer services and treatment, improve the breast cancer patient experience and augment breast cancer research. It is important that if an electronic records system is developed, it must be of value for individual health care and public health. However, the Department of Health should ensure that patients are not denied the right to decide who may access particularly sensitive information.

  2.2  PCTs and all NHS staff should be supported by the Department of Health in creating and maintaining systems to ensure that information held on electronic patent records is both accurate and up-to-date. Such accuracy is essential to both safe and effective treatment, and to the validity of research based on the information stored, and therefore also benefits both the individual patient and public health as a whole.

  2.3  The Department of Health should ensure that all staff are fully trained in data security and patient confidentiality, and that all and any access to data takes place only in specified circumstances. It is important that only healthcare professionals directly responsible for a patient's care should have access to the full contents of electronic records, with support and other staff being granted only access appropriate to their role.

  2.4  The Department of Health should ensure that any electronic records system established is protected by the most thorough and up-to-date security hardware and software available, accompanied by effective systems to both limit the damage caused by and inform patients of any breaches.

  2.5  The Department of Health should permit the use of anonymised electronic patient data in research, as a valuable resource that presents no risk to patients. The use of selected identifiable data should also be permitted, in both circumstances where express consent has been obtained from the patient, and where despite every effort such consent cannot be obtained, but approval by ethics and other regulatory bodies has been granted.


  3.1  Breakthrough Breast Cancer is the UKs leading breast cancer charity and is committed to fighting breast cancer through research, campaigning and education. Breakthrough has established the UK's first dedicated breast cancer research centre, in order to realise our vision: a future free from the fear of breast cancer. Breakthrough campaigns for policies that support breast cancer research and improved services, as well as promoting breast cancer education and awareness amongst the general public, policy makers, health professionals and the media.

  3.2  Breakthrough works closely with healthcare professionals, patient advocates, and researchers. Our memorandum incorporates the views of Breakthrough and members of its Campaigns & Advocacy Network (Breakthrough CAN)—which is made up of over 800 individuals and organisations. Many members of Breakthrough CAN have personal experience of breast cancer as well as being involved in and working alongside their local NHS to try to deliver better treatments and services for people affected by breast cancer and their families. Breakthrough consulted Breakthrough CAN members, healthcare professionals and breast cancer researchers in the development of this memorandum and their views are reflected in its content.

4.   What Patient information should be held on the new local and national electronic record systems, and should patients be able to prevent their personal data being placed on these systems?

  4.1  Breakthrough broadly welcomes the development of any system that will enhance breast cancer services and treatment, improve the breast cancer patient experience and augment breast cancer research.

    "I am all in favour of electronic patient records as it could help save lives. " Breakthrough CAN member, Lancashire.

    "...when patients are being treated in hospital the experts need all the necessary information to give the best diagnosis and treatment. Ideally 100% security of records is needed. [I] hope that electronic records lead to more accurate and efficient diagnosis, treatment and research. " Breakthrough CAN member, East Sussex.

    "For the most part I would support the notion of electronic patient records in that [they] provide (a) greater continuity of care with all members of the multidisciplinary care team able to communicate with each other and have instant access to decisions made by other carers regarding individual patients. This is particularly important when hospitals are split over several sites, or where radiotherapy or chemotherapy is held at a regional centre but the local unit is responsible for local care; (b) it avoids the issue of notes getting lost in transit between sites. " Consultant breast care nurse, Hampshire.

  4.2  Although we understand that the initial patient electronic record, or Summary Care Record, will contain basic information (such as details of allergies, current prescriptions and reactions to medicines), it is important that the eventual complete electronic patient record includes all clinically useful information. For example, past and current medication, significant past medical problems, diagnostic test results, allergies, general health and lifestyle information (such as height, weight, smoking, alcohol consumption) and demographic information, including ethnicity. Details of any information prescriptions or signposting to further information and advice that a patient has received should also be included in their electronic records once this information scheme has been rolled out.

  4.3  It will be important to ensure that the data held on any patient record is up-to-date and accurate:

    "The disadvantage of allowing [electronic] data to be more widely available is that the information is more likely to be relied upon in, for example, emergency situations. At present a GP would be contacted directly and the contents of the records confirmed or verified. With electronic patient records this is unlikely to happen." GP, London.

  4.4  A balance must be reached when determining the level of control a patient has over the content of his/her electronic patient record. Some patients would ideally like to have the right to prevent their personal information being placed on an electronic patient records system, although there is recognition that this could lead to delays in accessing records and treating such patients. However, it is also important that if an electronic records system is developed, it must be of value for individual health care and public health:

    "My personal view would be in general to favour [individual health care and public health] provided there is no harm done to the patient. The more that individuals can prevent their data entering, the more the whole system becomes unusable, particularly for public health, but also for individual patient care. Thus, I would be in favour of at least some data being present for everybody, even if there are degrees of detail that individuals could prevent." Epidemiologist, Surrey

  4.5  Breast cancer patients would also like to see the provision of a "sealed envelope" so that every patient can determine who should access sensitive information contained within their electronic record:

    "If a patient has medical conditions or treatments that [they] do not want others to know about they should be able to have that information kept private and not kept on the electronic record." Breakthrough CAN member, Lancashire.

    "I... have some concerns regarding delicate information being included—such as in-depth psychological assessment, sexual health etc. But in terms of general diagnostic information and care necessary for treating the patient in a multidisciplinary way I support [electronic patient records]." Consultant breast care nurse, Hampshire.

5.   Who should have access to electronic patient information and under what circumstances?

  5.1  Health care professionals directly responsible for a patient's care should have access to the relevant electronic health care records. Other staff needing access to a patient's data, for example medical secretaries or GP receptionists, should have levels of access appropriate to their role. It is important that all health care professionals receive adequate training in data security and patient confidentiality.

  5.2  There is concern that the electronic records will be accessible to parties that do not have an interest in patient care:

    "GPs and hospital doctors only [should have access]. Not insurance companies, police (without court order), social services or any other party without express consent." GP, London.

    "No relatives, friends or acquaintances of patients should have access without prior consent by the patient." Breakthrough CAN member, Lancashire.

    "There needs to be prevention, however, of outside individuals walking up to hospital computers and being able to look at other people's records." Epidemiologist, Surrey.

  It is therefore important that electronic patient records can only be accessed by appropriate parties, under specified circumstances.

  5.3  Breakthrough CAN members and health care professionals have told us that they would prefer a simple system where all patient data (apart from that in the "sealed envelope") can be shared by relevant clinical staff, unless a patient chooses not to have an electronic record. A system that requires patient consent each time an electronic record is shared is likely to be complex and cumbersome:

    "...this would seem impractical and could lead to mistakes. I think patients do not need to have the right to choose who has access to information if it is only [clinical] staff with that right." Breakthrough CAN member, East Sussex.

    "...the administration of this might be impossibly complicated and if that is the case it would be better to have a simple opt in or opt out system only. " GP, London

    "With regard to whether patients should be able to control who has access to [their record], I think that clinically it would be too complex if each record had different access provisions... so there should be reasonable... provisions that allow access by relevant clinical care staff. " Epidemiologist, Surrey

6.   Will patient confidentiality be adequately protected?

  6.1  No computer system is entirely immune to hacking and both Breakthrough CAN members and health care professionals are extremely concerned that an electronic patient records system will be vulnerable to security breaches:

    "Confidentiality will probably not be as good as when all records were paper and locked in the records office. But hopefully the benefits of clearer and quicker to access records will outweigh this potential disadvantage. " Breakthrough CAN member, East Sussex.

    "I feel that there is a potential of people's medical history being cloned and false identities being easily created. " Breakthrough CAN member, Hampshire.

    "I think the NHS electronic record system is open to widespread breaches of confidentiality. The system is in no way secure and there are far too many people with the potential to access records far too easily. " GP, London.

    "The only concerns I have are in relation to confidentiality and access... mechanisms should be in place to protect individuals from potential invasion of privacy." Consultant breast care nurse, Hampshire.

  6.2  If an electronic records system is established, it is essential that it is protected by the most rigorous security software and hardware possible. All security measures must be kept up-to-date and provisions must be in place inform patients and their clinicians if the security system is breached and to limit any potential harm this may cause the patient.

7.   How should data held on the new system be used for purposes other than the delivery of care?

  7.1  Breakthrough CAN members have told Breakthrough that they support valid research to enhance breast cancer services and treatments, improve patients' quality of life and investigate the causes of breast cancer. Some health care professionals and Breakthrough CAN members feel that if the electronic data is to be used in research without the express consent of the patient, all identifying information should be removed:

    " far a[s] cancer is concerned all research is good and therefore information should be available for medical research... without the patient being identified." Breakthrough CAN member, East Sussex.

  7.2  Health care professionals and scientists that undertake breast cancer research agree that anonymised patient data is an extremely valuable resource:

    "Provided no harm is done to the individual, I favour the Scandinavian assumption that individuals owe it to society to some extent to allow their data to be used for a public health benefit... For anonymised data there is no possible harm to the individuals, so I think individuals should not have to consent [to] anonymised uses. " Epidemiologist, Surrey.

  7.3  However, in some research studies it may be necessary to include selected identifiable patient data and it may not always be possible to obtain the express consent of every patient involved, especially in large scale studies. While Breakthrough believes that every effort should be made to obtain patient consent for such research, if this is not possible and the research is deemed suitably important, identifiable patient data should be used without consent as long as the research has the approval of an ethics committee, the relevant Caldicott Guardians[33] and bodies such as PIAG[34]:

    "Your information will go to the cancer registry without your permission. Relatives cannot change what goes in the death certificate.

    Research is done in all these areas, and some has been very beneficial to the health of the nation." Genetic oncologist, London.

    "If active consent was required, then large scale research would become very difficult, and potentially selected and hence biased, which would seriously damage the validity and hence value of doing the studies... For identifiable data, I think ethics committees should decide whether there could potentially be harm, and whether, on a case-by-case basis, individual consent is required. " Epidemiologist, Surrey.

Vicki Nash

Breakthrough Breast Cancer

15 March 2007

33   Since 1999, each NHS Trust has had to appoint a senior member of staff to act as a Caldicott Guardian, responsible for overseeing the use of personal health data and ensuring that patients' rights to confidentiality are respected. Back

34   Patient Information Advisory Group (PIAG). This body was established by the Health and Social Care Act 2001 (England and Wales) to advise the Secretary of State for Health about when patient consent can be set aside and under what circumstances. Back

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