Posts Tagged ‘Confidentiality’

Protect confidentiality in life sciences boost

By Mike Broad - 6th December 2011 11:01 am

Patient confidentiality must be protected as part of new government proposals to boost the life sciences industry say doctors’ representatives.

Data from patient records could be shared with private companies as part of a move to boost biomedical research. A consultation to change the NHS Constitution is being launched so that patient data is automatically included in clinical research, but with patients being given a clear opportunity to opt-out if they wish.

Dr Vivienne Nathanson, head of science and ethics at the BMA, commented: “The use of anonymised health data could benefit patients, but we are concerned that elements of the government’s proposals could, if implemented, undermine patient confidentiality.

“We are especially worried by recommendations that would grant researchers, possibly from large commercial companies rather than the patient’s healthcare team, access to patient records. This could mean that details of an individual’s health status and treatment will be revealed if researchers are able to search through records and identify patients in order to contact them.”

Patient representatives reacted more strongly, with Patient Concern’s Roger Goss saying it signified the “death of patient confidentiality”.

The aim to better use the vast amount of clinical data harvested from the three million patient contacts that occur each day in the NHS.

Ministers want to attract further investment to the life sciences sector in the UK, which is already worth £50bn a year and employs 160,000 people.

David Cameron also announced a £180m fund to boost translational research, turning laboratory breakthroughs into commercial products.

The government also wants to deploy remote medical devices - such as home-based equipment that can send details of the vital statistics of at-risk patients directly to doctors - to 3 million people over the next five years. And it wants to put in place a new ‘early access scheme’ which will put new drugs and technologies in NHS hospitals more quickly - particularly for brain and lung cancers.

NHS chief executive, Sir David Nicholson, said: “The challenges the NHS faces to improve quality and productivity in the coming years means spreading best practice fast is not an optional extra, it is an operational necessity.

“The review gives us the tools to do that job by removing the barriers to spreading innovation and creating new local partnerships - Academic Health Science Networks - to support delivery. It sets out areas where there are particular opportunities for improvement, for example putting technology in peoples’ homes to help them manage their own conditions. It represents a call to action for everyone in the NHS to make innovation a central priority.”

Further measures recommended include the launch a new app and web portal providing a database of where clinical trials are going on. Members of the public will be able to log in and ask to participate. And a new requirement that all NICE Technology Appraisal recommendations are incorporated automatically into relevant local NHS formularies in a planned way that supports safe and clinically appropriate practice.

Minister for Universities and Science David Willetts said: “Our life sciences industry is a vital driver of growth and employs tens of thousands of people. But it is rapidly changing. We need to keep ahead of the game and make the UK one of the best places for companies to invest in innovation.

“To do this we need to create the right environment for scientists and business to work together and translate research into new, cutting-edge technologies and medicines. This will this boost our economy, create new jobs, and lead to better treatments for patients.”

The BMA’s Nathanson added: “It is encouraging that the government has recognised the importance of the life science industry to both the NHS and the wider UK economy. This vital sector already contributes significantly to the financial livelihood of our country and has the real potential to provide further benefits during this tough economic period. Patients also benefit from the new treatments and drugs that are devised by hard working clinical researchers.

“The BMA will be examining these proposals carefully. We believe that patient records must be kept confidential and be anonymised if they are to be used for research purposes unless explicit patient consent has been obtained.”

Not just tabloid hacks that invade patient privacy

By Sarah Burnett-Moore - 1st December 2011 10:38 am

Sorry it’s been a while since my last blog. I’ve been, er, busy. I can’t say what I’ve been busy doing in case my phone has been hacked by…(insert hated tabloid of choice). You’re laughing at me now, paranoid you say, well it’s wise to remember, just because you’re paranoid, doesn’t mean they’re not out to get you.

What’s triggered this is all the celebrities jumping on the hacking band wagon, the two that have intrigued me in particular are Hugh Grant and Charlotte Church. Grant made an interesting point, it’s not about defamation, to paraphrase - he got caught with a hooker and still made loads of money - the main concern seems to be the fundamental issue of confidentiality.

Both Grant and Church believed that their phones were hacked because of details emerging about the births of their children. It doesn’t seem to have occurred to either, that details may have emerged from rogue members of staff, or indeed other patients. Funnily enough, I am currently ploughing my way through Information Governance online training modules, so this topic is quite ‘live’ to me, as they say in the press. You may imagine that patient details are sacrosanct, but let me assure you that they are not.

A good friend of mine is a well known actress and national treasure. A while back she was admitted to a private hospital for a fairly major operation. Within hours of returning to her room, she had a call for her surgeon, to say that a red-top journalist had called him on his home number asking for details of the op. The hack knew what the operation was, her room number in the hospital, and the pseudonym under which she had booked. She hadn’t used her mobile phone once, so clearly a member of staff was quite happy to sell details to the press.

Unfortunately she felt that a formal complaint to the chief executive might potentially lead to further breaches of confidentiality, but needless to say, she won’t be going to Hospital X ever again.

A thornier issue is how to deal with other patients and the famous, since the other patients are presumably under no legal obligation to keep their gobs shut. The cheap weekly glossies encourage ‘celebrity spots’ and covert photography. The worst infringement I have ever seen was when I was conducting a brief consultation with a very famous footballer, just outside the MRI suite in a private hospital. One of the other patients was brazenly filming this on his smartphone.

To give the footballer his due, he calmly walked over to the perpetrator and offered his hand for a friendly shake. The guilty party spluttered and looked abashed, my World Cup-winning patient smiled sweetly and said: “Sorry, I assumed from your behaviour that I must know you.” What a charming way to handle it.

Tabloid journalists may be vile and disgusting, but they’re not to blame for all breaches of confidence.

Child protection - guidance on confidentiality and disclosure

By Dr George Fernie, senior medicolegal adviser, and Gareth Gillespie, casebook editor at the Medical Protection Society - 22nd March 2011 10:47 am

The issue of confidentiality is a complex one for doctors, particularly with regards to disclosing patient information to third parties. When you can and can’t do it, and whose consent you need and in what circumstances, are legal and ethical dilemmas that are among the most common queries received on the MPS advice line. When you also have to consider possible risks to a child, it is an issue that can get even more complex and automatically charged.

The GMC freely acknowledges that: “Confidentiality is central to trust between doctors and patients. Without assurances about confidentiality, patients may be reluctant to seek medical attention or to give doctors the information they need in order to provide good care. But appropriate information sharing is essential to the efficient provision of safe, effective care, both for the individual patient and for the wider community of patients.”

Within the area of child protection, the underpinning principle is that the safety and welfare of the child is paramount, and that it takes priority over other considerations. But your duty to disclose (or not) also rests upon whether the child or young person (aged under 18) sufficiently understands the purpose and consequences of the disclosure i.e. whether or not they are Gillick competent or complies with statute based law in Scotland .

If the child has the capacity to consent to disclosure of their personal information, and refuses consent, you must nevertheless disclose the information if it is necessary to protect the child or someone else from serious harm, or if it is justifiable in the public interest. You should weigh up each situation on a case-by-case basis, giving careful consideration to the child’s reasons for withholding consent; if you do decide to disclose the information, you should explain your decision to the child, if practicable.

Examples of situations where you would be expected to disclose patient records to a third party are, according to GMC guidance: “[If] the information would help in the prevention, detection or prosecution of serious crime, usually crime against the person… [or] a child or young person is involved in behaviour that might put them or others at risk of serious harm, such as serious addiction, self-harm or joy-riding.” Other examples are for the purpose of a criminal investigation, which includes terrorist activity, and a GMC investigation or coroner’s inquest.

Another area of concern that is put forward by the GMC is child protection. As hot a topic as ever at the moment, the issue of child protection is covered in some depth in paragraphs 56 to 63 of the GMC’s 0-18 Years: Guidance for All Doctors (2007).

Even if you are not in a position where you work regularly with children and young people, as a doctor you play a key role in the protection of children - which means you must always be vigilant for early signs of abuse or neglect.

You are in a unique position to deal with any risks posed to children and young people, and may be privy to confidential information that is not made available to teachers and social workers, for example. However, such a position can place you in a difficult ethical dilemma - information delicately confided in you by a child may need to be disclosed if you feel it suggests a risk to the child’s safety; the child and/or parents, on the other hand, may fear contact with the police or social services. While it is preferable that you make them aware of the importance of sharing such information, you must take care not to delay notifying the appropriate authorities if this will increase the risk to the child.

The situation is even more blurred in scenarios where a child or young person lacks the capacity to consent. While those with parental responsibility can consent to disclosures on their child’s behalf - and the consent of only one such person is needed in this case - you may find yourself in a position where you do not feel the person with parental responsibility is making a decision that is in the best interests of the child. If this particular dilemma cannot be resolved by discussion and mutual agreement, then it is strongly advised that you contact your medical defence organisation for further guidance.

A child who is not Gillick competent may confide in you with information that they do not wish to be shared with their parents. If you require the parent (or those with parental responsibility) to make an important decision regarding consent, then the child’s best interests again take precedence; as the GMC says: “You should usually try to persuade the child to involve a parent in such circumstances. If they refuse and you consider it is necessary in the child’s best interests for the information to be shared (for example, to enable a parent to make an important decision, or to provide proper care for the child), you can disclose information to parents or appropriate authorities. You should record your discussions and reasons for sharing the information.”

Ultimately, the primary concern is the safety of children and young people, and you should have no fears over raising a concern that later proves groundless. As long as all disclosures are made through the appropriate channels, and you can show that you had a reasonable foundation for your initial concern, you will be able to demonstrate any decision that you have made was justified.

Doctors to flag up mentally ill gun owners

BBC Health - 15th June 2010 4:07 pm

Doctors are preparing to share information on gun owners with police so they can flag up patients who could be a danger to themselves or others.

The BMA says discussions are taking place with the police and the Home Office on exactly how this system might work.

Electronic tags could be placed in medical records to show which patients hold a firearms or shotgun licence.

Read more at BBC Health.

Police to be notified after criminal wounds

By Mike Broad - 28th September 2009 4:58 pm

Doctors will have to notify the police in future if they treat a patient who’s a victim of gun or knife crime.

New GMC guidance, which comes into force later this month, explicitly states that doctors should report all gunshot wounds and knife crime for both children and adults despite the potential breach of patient confidentiality.

Firstly, doctors must inform the police quickly of any incidents of wounds resulting from a gunshot or blade. And, secondly, they must make a professional judgement about whether disclosure of personal information about a patient is justified, such as when there is a risk to patients, staff or the public.

Doctors should ask patients whether they are prepared to talk to the police and to explain the potential consequences of not doing so. However, while doctors must respect a patient’s decision, if it is probable a serious crime has been committed, or others are at risk, doctors may now disclose the patient’s identity and other confidential information to the police.

Dr Henrietta Campbell, former CMO in Northern Ireland, who chaired the GMC’s working group on confidentiality, said: “We are not asking doctors to force patients to speak to the police but we are asking them to pass on information which will help the police to help protect patients, the public and staff from risks of serious harm.”

Responding to the GMC’s guidance, the chairman of the BMA’s medical ethics committee, Dr Tony Calland, said: “Doctors are very willing to cooperate with the police to help tackle gun and knife crime and we support the GMC guidance on the reporting of these events. We are pleased, however, that the GMC has indicated that doctors should use their professional judgement in deciding whether to disclose of the identity of patients involved in suspected knife and gunshot attacks.

“Ultimately confidentiality is the cornerstone of the doctor-patient relationship and it should only be breached in the rare circumstances where it is clearly in the public interest to do so.”

Mr Tunji Lasoye, emergency consultant at Kings College Hospital, who has treated many patients for gunshot and knife wounds, said: “It is so important for doctors to play their part in the protection of the public and the monitoring of violent crime. One way of doing this is to share appropriate information with agencies in ways that don’t breach patient confidentiality, whenever possible.”

Other areas covered in the guidance also include reporting concerns about patients to the DVLA, when, due to ill health, a patient might be unfit to drive; responding to criticism in the press, which may involve inaccurate or misleading details of doctors’ diagnosis, treatment or behaviour; and disclosing information for insurance, employment and benefit claims.

Confidentiality was produced following a three-month consultation period and takes effect on 12 October. Read the full guidance

Tips for doctors on managing celebrities and the media

By Dr Anahita Kirkpatrick, MDU medico-legal adviser - 28th August 2009 10:59 am

Stories about the health of celebrities regularly hit the front pages and it can lead to confidentiality dilemmas for the doctors and other healthcare staff providing care and treatment.

Famous names, such as the footballer, John Hartson or the late Jade Goody may decide to comment publicly about their illness. However, this does not mean that a doctor can comment freely about a famous patient’s treatment or prognosis, even when many of the details are already in the public domain.

Indeed, even confirming to the media that a certain celebrity is a patient, without their explicit permission, is a breach of confidentiality.

When asked for details about a celebrity patient, hospital doctors should always act in his or her best interests and follow the GMC’s guidance booklet Confidentiality protecting and providing information (2004), which says information about patients can only be disclosed with their expressed consent.

If a patient has died, the GMC makes clear a doctor’s duty of confidentiality towards them continues. In addition, in 1997, the GMC was prompted by the media attention surrounding cases such as Mandy Allwood (the woman who was pregnant with eight foetuses), to remind doctors about their duty of confidentiality when dealing with the media. It stated:

1. Always treat as confidential, any information you learn in a professional capacity, whether or not the information is in the public domain.

2. Always obtain explicit prior consent from patients if they will be identifiable from the details you disclose.

3. Whenever you can, obtain such consent even when you do not intend to disclose a patient’s identity.

4. Remember that patients can be identified from information other than names and addresses: a combination of details such as a patient’s condition or disease, their age or occupation, the area they live in, their medical history, or the size of their family, can lead to individuals being identified.

In general, the MDU’s advice would be to think very carefully before you to talk to the media about a celebrity patient, even with the patient’s apparent consent. If patient asks you to issue a formal statement on their behalf, they would need to agree the content with you.

However, agreeing to be interviewed carries significant pitfalls in terms of patient consent. While you might agree general areas of discussion with the patient, neither you nor the patient can be certain what you might be asked.

However cautious you may be, you may inadvertently reveal details that the patient did not consent to being released, such as aspects of the celebrity’s medical history that are relevant to their current treatment.

While some journalists may seek to persuade you otherwise, disclosure of information about a celebrity patient without their consent - if they are unconscious for example - would be difficult to justify. Such disclosures are generally made only in the public interest in exceptional cases where “the benefits to an individual or society of the disclosure outweigh the public and the patient’s interest in keeping the information confidential.” Ultimately, the public interest can only be determined by the courts.

However, it almost goes without saying that the public interest is not the same as what interests the public.

If, on balance, you think it’s advisable not to comment about a celebrity patient to the media, you may prefer to explain that you are unable to comment because of the duty of confidentiality you owe to all your patients. In the MDU’s experience, many journalists will respect a doctor’s decision not to speak about a patient if they understand the reason.

Your NHS trust should have a clear protocol governing the disclosure of patient information to other organisations and most hospitals now have a press office that can co-ordinate any response to the media, such as a condition statement.

Doctors can also contact the MDU press office for advice if they are unsure how to respond to a press query about a patient.