A Question of Confidentiality
Records (Medical NHS UK)
Accessing medical records
Official NHS Guidance
[Abstract] Full Text PDF
Do you trust your health and social care workers with your sensitive information? Do you wonder what happens if people ‘find out? And if there is a breach in your file security? What redress do you have, and how do you go about getting satisfaction?
The following article is a must for your empowerment as transgendered people. Health and social care services like to pride themselves on confidential record keeping; and the word ‘confidential’ is probably one of the most overused words in transgendered circles. But what happens outside of this ‘secure’ transgendered group?
Health and social care agencies do have strict confidentiality policies, and go to extreme lengths to enforce them. Which are as follows:
Agency confidentiality Policies, contracts of employment in which failure to follow the agency confidentiality policy can lead to dismissal. Complaints procedures which entitle people to make an official complaint about an individual e.g. via the DOH (Department of Health), National Health Service Executive. Professional codes of conduct. Practitioners who are members of professional associations such as, medical doctors, Police, nurses, dentists, chiropodists, or occupational therapists are bound by codes of conduct. Breaches in confidentiality can lead to disciplinary action and being ‘struck off the register (e.g. The General Medical Council, The United Kingdom Central Council for Nursing, Midwifery and Health Visiting). The civil law gives people who believe their confidentiality has been breached the opportunity to sue for damages – but only if they can demonstrate that some tangible harm has come to them as a consequence. International treaty obligations, such as the European convention on
Human Rights, also guarantee privacy and confidentiality.
Article 8, says:
1. Everyone has the right to respect for his/her private and family life, his/her home and correspondence.
2. There shall be no interference by a public authority with the exercise of this right except in accordance with the law and as is necessary in a democratic society in the interests of national security, public safety, or the economic well being of the country, for the prevention of disorder or crime, or the protection of health or morals, or for the assertion of the rights and freedom of others.
In this statement a lot depends on who defines what is ‘necessary’, what is ‘disorder’ and what is ‘moral’. But this is not entirely a matter for the government concerned. You are no-doubt aware that in the 1980s and 1990s the European Court has overruled the British Government’s definition of such terms. On the whole the European Court is most interested in striking a balance between the individual’s right to privacy and the benefits to others of this information becoming public. There are some cases where some people’s activities are overridden these tend to be:
Criminal activities, drug dealing, money laundering, terrorism etc. – Activities which harm other people.
It was through this that the government introduced the Register of Sexual Offences Act 1997 (Home Office, 1996b) and supervision registers of people with mental illnesses regarded as a danger to others (DOH, 1995a). There is also ‘positive vetting’ of individuals’ criminal records before they are able to work with vulnerable people. “If a person is put at risk by their own desire for confidentiality, than that is their affair. unless they can be regarded as mentally incapacitated and hence unfit to make this decision. In that case their rights to confidentiality can be legally breached,’ (Law Society/British Medical Association, 1995).
Laws requiring organisations to protect confidential information. The most important of these is:
The Data Protection Act 1984 which in October 1998 was joined by the 1995 European Directive on Data Protection
Details on this are shown below. The Data Protection Act 1984 and the 1995 European Directive on Data Protection. This act only covers computerized records, although it is good practice to apply these guidelines to paper-based records. It applies to records which are not a matter of public knowledge. The agency has to register with the Data Protection Registrar, becoming thereby accountable to the registrar for making sure that the information recorded:
“was obtained legally and without deceit and is used only’ for the purpose for which is was collected is relevant to the purpose for collecting it and contains no more than is necessary was accurate when collected and, when necessary, is kept tip to date should be kept no longer than is necessary and that: appropriate security measures are taken to prevent unauthorized access individuals are entitled to see the data held about them and should know their entitlement.”
The main effects of the European Directive will be to extend this code to paper-based records and lift restrictions on personal access to personal records made before certain dates ( e.g. the 1991 threshold for health records. (Adapted from Data Protection Registrar, 1994; Home Office 1996a)
What the Experts Say
“It is well known that the voluntary sector have stricter codes of confidentiality than the statutory services, others have been very lax in this regard” (Knight, 1993). Confidentiality with regard to gossip can be difficult to maintain in agencies with an informal style of working or where workers may be volunteers, or service users themselves. It can, therefore, be difficult to discipline people without a contract of employment or a professional body.
So what can you do? One approach is not to part with any information at all! This might be OK for transgendered people who never leave their house or aren’t planning on surgery, but that for most is not an option. “Despite all the attempts to maintain confidentiality, anyone who works in the NHS or in a local authority social services or social work department will know that they are rather ‘leaky’ so far as confidentiality is concerned. Many people who work there simply do discuss patients or clients with their spouses and their friends, even if they usually try to do so without identifying them. However such breaches of confidentiality do not usually concern what is written into the records. More usually the breaches come from the tittle-tattle of working life.
By comparison with gossip, the confidentiality of records is relatively easy to ensure. Because records are physical objects they can be locked away, or, if electronic, can be protected with passwords and security codes or by encryption. In the last resort it is impossible to defeat the determined hacker, but it is possible to make unauthorized access difficult” (Feldbaum and Dick, 1997). Once information is outside the group of people who are bound by a confidentiality policy there is no knowing where it will get to, or how distorted it might become in the retelling. Some kinds of information can be very discrediting for transgendered people and of course there is always the possibility of blackmail.
Find out what the information collected about you is for and who it is going to be shared with.
This gives you the right to informed consent as opposed to *Implicit consent which is assumed in the majority of cases.
* The doctrine of implicit consent
Unless you specifically state otherwise it is assumed that you have given ‘implicit consent’ to:
1. the transfer of information between one practitioner to another within the NHS from the NHS to social services involved in your care
2. A patient who is unable to give explicit consent is assumed to have given implicit consent to actions performed to his or her own interests.
3. The doctrine of implicit consent should not be over-used. It is good practice to ask for explicit consent. When acting on ‘implicit consent’ practitioners have a duty of care to ensure that information is only shared with those who have a legitimate right to know
4. can be trusted to act in the patients interests or, Jailing that the public interest can be trusted not to disclose the information improperly
5. Implicit consent applies to consent to treatment, to transfer of care from one health and social care agency to another as well as consent to the transfer of information.
(adapted from Department of Health, 1 996c, 0HT29)
Text extract from The Open University’ (ISBN 07492 3424 5)
The doctrine of implicit consent is often so ‘implicit’ that service users don’t know about it! Remember it is difficult to make a complaint if you do not know your rights, entitlements or what other people are authorized to do with you records. (People wanting to find out more about a medical condition which appears in their records can call NHS Information Service: Freephone 0800 66 55 44).
Remember there is nothing wrong with wanting to know about your records and you are entitled to do so. One of the advantages to this is to check for errors. A common finding for GP records is that around 12% contain inaccuracies (Gilhooly and McGhee, 1991) with studies of social work records of 2400 inaccuracies! We are all guilty of gossip and the female side of us certainly doesn’t help! But you must remember that a bitching TG has just as much to lose as you have. If the neighbourhood or work colleagues begin nasty rumors you can take three routes:
1. Put up with it and smile and hope it’ll go away.
2. Do an Eddie Izzard and shout back what they shout at you or simply tell the truth,” are you a TG?” “Yes!” “Oh!” – The end of the conversation!
3. Find out how this rumour came about trace it to its origins and make an ‘official complaint’. This is by far the most successful method for you, it opens doors to suing for damages.
For more information on legal aspects of being transgendered contact ‘Press For Change’.