Thank you for the invitation to address this important conference, and to you for your interest.
I want to speak to you this afternoon about the Freedom of Information Act (FoI) and the health service; how it has operated in practice for the past five months and what it may mean for the public and health boards when it comes into effect for the wider health service, next Wednesday October 21st.
The Freedom of Information legislation came into force with the promise from politicians, and others, that it would herald an end to secrecy culture, and that we would have more openness and transparency on the part of public and civil servants.
Though welcome, the new legislation came very late in the day here. Public access to information should be a basic right, not a privilege granted by the State. Sweden has had FoI legislation since 1766, Australia since 1983 and the Netherlands since 1992.
Since April 21st last, the FoI has applied to the Department of Health, the Blood Transfusion Service Board and the Irish Medicines Board. Shortly after the Act came into effect, I sought both personal information and general information from all of these bodies. The file of correspondence that has since amassed makes for pitiful reading. The process of securing information is tedious.
Whatever about the effects of the Act for other areas, I certainly believe that the spirit of the legislation is not being put into force in the health service. Every subsection, technicality and interpretation is being used to delay the release of material. That does not augur well for its extension to the wider health service from next week.
The processes under the Act are incredibly cumbersome, time consuming and costly. I have been unable to secure information of any real use and have been refused access to a range of data. In fairness, some data, which was not required to be released, was provided to me. For other information, a large amount of cash is sought.
For a journalist, the time delays in securing material under the FoI Act can be months, and the costs are a serious hindrance to the pursuit of a running story and the public interest. And, because the FoI Act only covers general information coming into existence after April 1998, it means access to some very important health reports and material, unless it is personal, is not possible.
Recently, when a patient sought personal information from the Irish Medicines Board, which regulates the drugs area and blood products, she was referred to the organisation's solicitors, which is completely against the legislation.
Another patient, when she sought details of her medical records from a health board, was issued with a letter asking that she declare that, if the records are released to her, she must agree not to use the material for any legal action. That will no longer be lawful from October 21.
So, what will the FoI Act mean for patients and health boards from later this month. Public hospital patients and medical card patients will have a legal right to personal medical records, the right to have these records amended and a right to reasons for administrative decisions.
Records will include records held by their GP, as these are deemed to be the property of the health board where the patient concerned is in the GMS. Records will also include diaries, computer discs, databases, photographs, x-rays and even the popular ‘post-it’ notes. Up to now there has been no absolute right of access to written medical records and most patients have been forced to take legal action to secure records.
A recent annual meeting of a doctor's organisation in Tipperary voted not to co-operate with the FoI legislation, in terms of handing patients' medical records over to health boards. GPs are looking to a system whereby they would give the information to patients' themselves.
Health boards are also bracing themselves for the potentially massive administrative workload if large numbers of patients seek records. At the back of administrators' minds and doctors too will be that a request for the release of medical records may be a ‘fishing trip’ for a medico-legal action.
On that point, if a doctor has a good relationship with a patient and takes proper notes during consultations, he or she should have nothing to fear. Indeed, where a patient feels the need to use the FoI Act to secure medical records, that would in general indicate a poor doctor-patient relationship in any event.
Some patients have felt the whole healthcare process shrouded in mystery with no satisfactory answers to questions. The FoI Act should help change that.
There have been problems with communication skills among doctors and perhaps, with that now being dealt with in medical school training and by medical insurance companies, and with the FoI Act provisions, we will see a reduction in litigation.
Individual doctors and some doctors' organisations are concerned under the Act about patient confidentiality and worried about information leaking to third parties. It has yet to be tested but partners of those with infectious diseases, such as HIV or Hepatitis, may be able to seek disclosure of personal information relating to their partner, if it is necessary to protect another person's health or life.
The Freedom of Information Commissioner has warned that he will not tolerate hospitals and health boards refusing to provide patients with their medical records, on the grounds that the documents may be used in a subsequent court case. Also, health authorities are not permitted to seek the motivation for records being sought.
Patients will be able to seek reasons as to why they are placed at a certain position on a waiting list, why they are being refused the medical card and have access to all of the documents which may be generated following a complaint made by them to a hospital.
There are some caveats. In the case of a record of a medical, psychiatric or psychological nature, if it is felt that the release may be prejudicial to the patient's health, the legislation allows the material to be released to another ‘health professional’ having expertise as the requester may specify. You can see the potential for great conflict there with say alternative practitioners being nominated by the requester to receive the medical records.The definition of health professional in the Act may not necessarily mean that the information will be provided to a qualified doctor or nurse. And what doctor likes his or her decisions being reviewed?
The involvement of health board executives in the decision making process for the release of clinical data, for example information regarding mental health, is also a potential source of conflict.
On the issue of mental health, the Freedom of Information Act will ensure that never again will Inspector of Mental Hospitals reports be suppressed from publication. The State refused to publish reports from the Inspector from the 50s up to the mid 80s. The Inspector has a public duty under legislation, to look after the interests of the mentally ill, a very vulnerable group in society. He was denied the right to make his findings public because it would be politically unpalatable.
Successive governments and Health Ministers prevented publication because the findings of his reports were horrific. Many patients lived in cramped, Dickensian conditions, some tied down, others living in filthy rat infested rooms. Sanitary provisions were miserable and some were naked due to a lack of clothing. The violation of human rights was unimaginable. Even today, all of these reports have not been published. And, under the existing FoI legislation, there is no requirement for them to be.
One of the great failings of the Act is that it only applies to material generated from April 21 last, in the case of general information. Personal information can be sought anywhere before that time. Earlier records can be sought if needed to understand later records which have been accesed.
This Act was drafted by civil servants and State lawyers, on the advice of politicians who know where the bodies are buried, so to speak. The legislation is over 80 pages long and while on the face of it, is quite liberal, the exemptions regarding disclosure are a problem.
The exemptions are regarding government meetings, deliberations of public bodies, law enforcement, information provided in confidence, commercially sensitive information and personal information.
In terms of the health service, the Act will be a major culture change for many. However, I should acknowledge that in recent years all health boards have appointed communications executives and many of the major hospitals also have good systems for dealing with media queries. Health boards and other health agencies are considerably more open now than a decade ago although, with the PR sector involved, there is obviously a certain amount of spin-doctoring going on.
However, there still remain the secrecy culture vultures, many of them ensconced at the Department of Health in Dublin. For example, a national conference on medical manpower a few years ago was closed to the press. Given that the public pay for the service provided by doctors, is it too much to ask that they know how policy is being decided?
A conference on medical education, organised by publicly-funded bodies, was also closed to the media and public last year. A whole raft of policy reports, commissioned by the Department of Health, with taxpayers' money have never been published. Thankfully, the FoI will ensure that future such reports are made public relatively quickly.
There is a certain irony in that the FoI Act will not apply to private patients or voluntary hospitals. However, it is expected that the legislation will be extended to voluntary hospitals soon—as they are funded, in part, by the State. It is also probable that the Medical Council, the policing body for doctors' conduct, will come under the Act, in time.
Overall, there will be a long learning period for the health service in the operation of this Act.
In the last week, the physician and barrister, Dr Denis Cusack has pointed to what he sees as serious problems with the FoI legislation as it relates to health records. He says that if health board chief executives have any sense, decisions on release of medical records will only be made after consultation with doctors. Pity the CEO adjudicating on records' disclosure in psychiatry and paediatrics against a background of marital or family disharmony.
The legislation will force decision makers in clinical and administrative areas to give full and careful consideration to decisions which affect the lives and health of people so fundamentally. However, as Dr Cusack notes, whether or not there is a legal right to access to clinical records could depend on the ambulance driver's decision on hospital destination. And what about a mix of public and private dental treatment in the same mouth?
Many observers believe that this new legislation will lead to doctors being much more careful in what they record in medical notes.
Indeed, nurses and lay administrators will be very aware that anything they record from now on may be released to patients. Because of concern over the effect of the Act, many doctors want to see separate legislation catering for the release of medical records.
At this stage the impact of the FoI Act on the Department of Health and other bodies currently covered has been much as expected. No significant health information of national interest has yet emerged. That may be due to the nature of the legislation or that, in truth, much of what transpires when civil servants meet is mundane.
You will all be aware of the great tragedy of the infection through the Blood Transfusion Service Board of over 1,600 women, men and children with the Hepatitis C virus from contaminated blood products. Much of the truth was exposed by the Tribunal of Inquiry, the campaign groups and the media.
While the saga is very complex and I do not wish to deal with it at length, there is an important message as regards the FoI Act. Two crucial revelations emerged late in the day in the scandal.
Firstly, a missing file which turned up in the Blood Bank in 1996, showed that the BTSB knew it had taken and used blood from a woman infected with hepatitis, against all the rules.
Secondly, the Cabinet was informed in 1995, in a report from the Attorney General to the Health Minister, that the Blood Bank was negligent, but government Ministers were told that this information should be kept confidential.
Neither of these two dramatic pieces of information, which were crucial to the victims, would have emerged if the existing FoI Act was in force at that time. The missing file only came to light after an order for discovery of documents by the late Brigid McCole, the first woman to die from the infection scandal. And, because of Cabinet confidentiality, what the Government was told in 1995 would not have emerged except for the decision of the current government to release the papers, in an election promise.
The FoI Act would have allowed those infected to secure their medical records and tests earlier from hospitals and for journalists to secure more information earlier on what the BTSB knew of the disease.
Some of you will also be aware of a new case I and others been covering in the last week, that of the Fallons from Chicago who have relations in Mayo. Mrs Sandra Fallon claims she was administered Hepatitis C contaminated Anti-D product at a Western Health Board hospital in 1993. The hospital deny that it was ever administered.
Some medical records have been released by the health board but apparently not all. There is a major dispute over what the medical notes released show. This is a case of life and death where the State and the Blood Bank refuse to provide Mrs Fallon with healthcare and general expenses, because they claim she was not given Anti-D and that she has a different strain of the virus to others infected. There are serious problems with the State's position in this matter and in some respects, there is a terrible sense of dejà vu about the Health Minister and the State's handling of this case and the McCole case.
From Wednesday, the Fallons will have a new right of access to all data from the health board under FoI legislation, hitherto not available. But today, they remain isolated in Chicago, Ireland having given them the two fingers. TV3 will broadcast a special documentary on the case tomorrow night at 8pm which I urge you to view, if possible. It is a lesson in how the culture of bureaucracy will be hard to change.
That said, the FoI Act is an important piece of legislation for the health service. The benefit of the legislation, in practical terms however, is in the value of the information that one can secure. If the nature of the information now to be kept by officials is to be more bland, watered down and cautious, the impact of the new legislation will be lessened and the benefit for the public less than what should be.
There is also the problem that if the information has been destroyed, you cannot secure it. I make this point because Ministers and senior government officials will often taken files with them on leaving office, or have documents or files disposed of or shredded on departure from office. Many of these files are ‘personal information’ very often the material of special interest to you and I. Why should it be that such files, which were generated and managed at taxpayers' expense in a public department, can disappear?
Returning to my experience in FoI applications, the view of the Department of Health is that although you may be mentioned in an internal document, that does not necessarily constitute personal information, you have to be the subject matter of the document. The Act does not allow public servants to ask questions as to why you seek certain information. However, they do ask you to be more specific on the material you are seeking, to the point that they can quickly establish what you are after.
While the new legislation may lead to serious workload implications for health authorities, more openness in the provision of information should lead to fewer complaints and queries from patients and the public. It may also reduce the number of Dáil questions that TDs have to table about the reason why Mrs Joe Soap has been refused a medical card or is number 99 on the waiting list.
It will also end a dreadful health service culture which does not recognise that information concerning a patient's health, is in reality, the patient's property. It is their body, their organs and their physical and mental state that is under examination.
It will be important that voluntary hospitals, funded by the State, will soon come under the ambit of the Act. Some of these hospitals refuse to carry out routine surgical procedures which are legal in Ireland and some have been run with excessive levels of secrecy. All health bodies that receive State, that is to say taxpayers' funds, must be accountable.
The FoI Act is new and its operation by health boards has yet to be assessed. My experience tells me that in covering the health service as a journalist, sound contacts, good-old fashioned leaks, people of good conscience and digging are, and will remain, the key to breaking and pursuing important stories.
It is likely that key reforms of the FoI legislation will be sought in the near future by both those who use it and those who have to operate it in the health service.
Thank you for your interest and your attention.
ENDS
The Law Department is grateful to Fergal Bowers for permission to
place this paper on this website.
The website of the Irish Medical News is at
http://www.ucc.ie/ucc/depts/law/foi/conference/
http://www.iol.ie/imn/