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It is estimated that up to 10% of UK patients invoke their right to confidentiality each year (NHS, 2003), at least to some extent, and research has shown (Tingle, 2002) that this is a subject that is of growing concern for many patients within the NHS system. Given the ability of patients to take legal action when their right to confidentiality has been breached, the issue of patient informatics has perhaps never been more important. The rule governing confidentiality between doctor and patient dates back at least as far as the 1964 formation of the Hippocratic Oath, which includes the following statement: “I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know” (Tingle, 2002: 5). As well as this moral guideline, patient confidentiality is further protected in the UK by law, with various statutes such as the Common Law of Confidentiality, the Data Protection Act 1998 and the Human Rights Act 1998 all serving to underline the right of a patient to expect confidences shared with a physician or medical carer to be respected. However, there are various scenarios in which a care provider, including a member of nursing staff, might find that he or she is compelled to disclose information about a patient, in which case it can be argued that the ethical, professional and legal issues underpinning confidentiality in nursing practice are by no means clear-cut. In fact, the issue of confidentiality can raise questions for even the most experienced nursing practitioners, in which case it is important to consider the importance, relevance of patient confidentiality and to consider situations in which the duty to respect confidentiality might become strained.
In the UK, issues relating to confidentiality are outlined by the 2003 NHS Code of Practice on Confidentiality, as well as supplements such as the 2010 guidance on public interest disclosures. The aim of the Code is to ensure that medical staff are fully aware of their obligations to respect patient confidentiality, of their duties to inform patients of the way in which their data will be handled, and of the circumstances in which confidentiality must be reconsidered. As the Code notes, “all staff should meet the standards outlined in this document, as well as their terms of employment… Much of what is required builds on existing best practice. What is needed is to make this explicit and to ensure that everyone strives to meet these standards and improves pratice” (NHS, 2003). In other words, the overall aim is to ensure that NHS staff incorporate the Code into their everyday practice in such a way as to make confidentiality a natural part of the NHS system. The Code divides the duty of confidentiality into four distinct phases:
Figure 1. Confidentiality model (NHS, 2003).
These four phases can be summed up as follows:
– Protect. Staff have a duty to protect patients’ data and other information, including confidences.
– Inform. Staff must ensure that patients are informed of how their information is used.
– Provide Choice. Wherever possible, patients should be able to decide how and where their information is used.
– Improve. This final phase recognises that there are always areas for improvement, so confidentiality should constantly be monitored and, where necessary, improved upon.
Patient care obviously demands that certain records are kept: it would be virtually impossible to provide adequate care to a patient if no records were allowed to be maintained. However, “nursing staff are compelled to keep confidences not only by UK law, but also by professional codes of conduct and by rules of the NHS” (Stanley, 2008: 158). As the NHS itself acknowledges, it must remain “a confidential service” (NHS, 2003) if it is to be fully trusted by patients. In many cases, patients in need of medical care are among the most vulnerable members of society, and there may be numerous reasons why they feel that they cannot fully discuss certain aspects of their lives. As Keegan and Levenson (2010) state, “the establishment of a blanket confidentiality policy will encourage some people to share more than they might otherwise be willing to offer” (Keegan & Levenson, 2010: 105), even if it must ultimately be accepted that there are some circumstances in which certain patients will never fully disclose all information. Nevertheless, from the point of view of the duty of care, it is important for medical staff to be able to develop a comprehensive understanding of a patient’s lifestyle so as to be able to determine whether any of these factors influence the course of treatment. A number of commentators note that while patients try to decide what information should be offered, they may also find the confidentiality clause in the doctor-patient relationship to be a welcome opportunity to share some burden that might have an impact upon their treatment.
Information disclosed by a patient must be treated as confidential unless there are compelling reasons to do otherwise. It is important to note, however, that anonymised information is generally considered to be free of the constraints of confidentiality, although failure to adequately protect the identity of an individual – no matter the intention – would constitute an ethical and legal breach. Nevertheless, there are situations in which information is shared, such as clinical audits and consultations with other medical staff, in which case patients might not immediately understand that this will happen and might become defensive when they subsequently discover that a disclosure has been made. For this reason, the NHS Confidentiality Code of Practice emphasises the importance of ensuring that patients are kept fully briefed on the way that their information will be shared. For example, Dimond (2010) states that “patients may view confidential information as a means of establishing a bond with a particular care provider, and may deem subsequent disclosure to be a violation of that bond even if the disclosure is fully in line with NHS practices” (Dimond, 2010: 105). In some cases, disclosure may include non-NHS bodies, in which case this concern is often increased and it is important that such bodies understand the importance of treating confidential information in a manner that conforms to the NHS’s own guidelines. In other words, the sharing of confidential information with outside agencies should only be allowed when it does not constitute a ‘leak’ in the process of guaranteeing confidentiality.
For all medical staff, however, there will inevitably arise situations in which they must consider breaching confidence. Among the most common are the following:
Situations where patients lack the necessary competence to understand explanations. If this is the case, all possible efforts must be made to get the information across and to watch for any kind of clear and unambiguous statement, or attempt at a statement, by the patient.
Children under the age of 16 have a right to confidentiality, but in situations where they are deemed to be acting out of their own best interests there is statutory permission for medical workers to breach confidentiality, e.g. to parents. Those parents might then be able to provide consent for the child.
Some patients are in a coma or are similarly unable to give consent. In such cases, due care should be exercised. In some cases, a next of kin can be consulted for the purpose of providing consent.
In some cases, court orders might apply to specific cases, compelling medical staff to reveal information that they would otherwise not reveal.
This framework sets out a clear set of conditions in which the usual markers of confidentiality are unable to function, in which case the patient’s best interests must be taken into account. Certain statutory rules apply, such as the First Principle of the Data Protection Act 1998, which concerns the issue of ‘fair processing’ and grants some leeway to practitioners when it comes to handling information for patients. Under Common Law, staff are also permitted to disclose information if it is deemed to be ‘in the public interest’, e.g. assisting in the capture of a dangerous criminal. In such circumstances, the context is clearly defined and medical staff must ensure that the proper guidelines for disclosure have still been followed. For example, disclosure may be made in the public interest if a patient is deemed to represent a harm to the public (e.g. as a potential terrorist) or if there is a serious risk of harm (e.g. the spread of an infectious disease, the risk of child abuse or the risk of some other type of violence). In these circumstances, a healthcare professional must consider the various implications of disclosure and must ultimately make a decision based on the demands of the NHS Code in this area.
When a patient has been asked for consent to share information, he has the right to refuse. In such circumstances, provided the patient is competent to make decisions, such a decision must be respected, even if it is deemed to be compromising the patient’s overall standard of care. As Dimond (2010) recognises, this can be “frustrating for medical staff, but patients have a right to refuse treatment and they have a right to refuse the sharing of their information” (Dimond, 2010: 35). When this happens, staff must find a way to work within the limits imposed by the patient’s decision. Although the Code prescribes “certain situations where the Mental Health Act can be invoked in order to determine that the patient is not competent to make such decisions” (Cordess, 2000: 7), this type of situation is rare and there are many reasons why a patient might want his or her information to be shared. One strategy that can be used to try to change the patient’s mind is to remind him of the clear rules regarding disclosure, so that he can be absolutely sure that his information will not be used in any way that might be deemed to be unsatisfactory. However, as Tingle (2002) states, “many patients who object to the sharing of their information do so on ideological grounds, and are unlikely to be dissuaded” (Tingle, 2002: 51). In such circumstances, the best that a nurse can do is usually to attempt to strike some form of compromise, but care should be taken to avoid a competitive or adversarial situation because some patients will use this as an excuse to become even more obstructive.
When dealing with children, this can be a particularly difficult area. The Code stipulates that young people aged 16 and over are presumed to be competent, whereas those under 16 “who have the capacity and understanding to take decisions about their own treatment are also entitled to decide whether personal information may be passed on and generally to have their confidence respected” (NHS,2003). In general, younger children are encouraged to involve their parents in the decision-making process even where there is no strict requirement for them to do so, in recognition of the fact that they might lack the emotional maturity to be able to make a considered decision. Some critics have argued that this is a sign that the current system is inefficient, and that children under the age of 16 should perhaps not be able to make such decisions on their own if they have been subjectively determined by staff to be competent. However, this is a debate to be carried out at management level and nurses must stick to the present rules, in which case staff must respect the decisions made by a child regarding the sharing of his or her information. Although there are provisions for parental consent to substitute for the child’s consent in areas where the child has refused to accept life-saving treatment, this does not extend to the issue of patient confidentiality and there has to be a clear competency based reason to ignore the wishes of a child in this area. This is one of the areas where the current NHS situation is most commonly criticised, since some people argue that too much power is given to children, who may not be in the best position to make informed decisions.
There are, of course, exceptions to all rules, and this is true when it comes to confidentiality within the NHS. MP’s, for example, can receive certain information if tests related to necessity and appropriateness have been carried out. Furthermore, it is entirely appropriate to disclose information to an MP if that MP has given a written assurance that the patient has previously consented to such disclosure; in these circumstances, there is no need to confirm this with the patient. When the police, meanwhile, request information, it must be remembered that they have no broad right to information without either a strong public interest factor or explicit authorisation by the courts. When authorisation for disclosure to the police has been granted, the information revealed should be pertinent to the request and should not be a general ‘dump’ of all available information; in circumstances where staff might be at risk, there may be cause to disclose more information, and this is another area where subjective judgement comes into play. The same rules apply to courts and their agents. In cases where the media requests information (e.g. about a celebrity, about a patient involved in a high-profile incident, or in circumstances where the patient’s family are complaining publicly about treatment levels), there is no automatic right to disclosure. If the patient’s consent to disclosure is not available, disclosure to the media can only take place if it is clearly related to a manner of ‘exceptional’ public interest. However, where information is clearly already in the public domain, there is freedom for staff to confirm that information.
Overall, it is clearly in the best interests of the NHS that the organisation’s reputation for strong disclosure and confidentiality policies remains in place. Any erosion of that reputation would undoubtedly impact negatively upon the ability of staff to provide adequate levels of support and care in some cases. Some critics have suggested that in areas where subjective judgements need to be made, e.g. where ‘public interest’ is in play, staff will tend to make decisions based on personal prejudices (in either direction) that would be different from staff member to staff member. There is certainly a degree of credibility to this claim, yet it is clear that there is no other mechanism by which quick judgements can be made. It is also clear that staff are constantly reminded (by the Code, among other things) of their duty to maintain confidentiality and of the compelling reasons why this is so important. The fact that staff are made aware not only of the letter of the regulations but also the spirit in which they are framed is a strong indicator of the seriousness with which the issue is dealt under NHS guidelines, and the strong level of importance attached to the matter of confidentiality. This is an issue that is covered by legal statute, but it is arguably just as important – if not more so – in terms of professional responsibility and adherence to professional guidelines regarding the maintenance of the carer-patient relationship and of the broader reputation of the NHS in general.
Cordess, C. (2000). Confidentiality and Mental Health. London: Jessica Kingsley Publishers
Dimond, B.C. (2010). Legal Aspects of Patient Confidentiality. London: Quay Books
Keegan, M. & R. Levenson (2010). Patient confidentiality. The British Journal of Hospital Medicine, 71 (7), pp. 105-107
NHS (2003). Confidentiality: NHS Code of Practice. URL: http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4069254.pdf (accessed 11/10)
NHS (2010). Confidentiality: NHS Code of Practice – Supplementary Guidance: Public Interest Disclosures. URL: http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_122031.pdf (accessed 11/10)
Stanley, P. (2008). The Law of Confidentiality: A Restatement. London: Hart Publishing
Tingle, J. (2002). Patient Confidentiality. London: XPL Publishing
This entry was posted in Uncategorized and tagged Confidentiality, Data Protection Act 1998, Hippocratic Oath, Law, Medicine, Nurse, Patient, Tingle. Bookmark the permalink.
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