Patient Rights Day is celebrated on 18 April. As last year, if I am not mistaken, this day was not celebrated in Malta. If it was, there was certainly no noise about it. It is good that both political parties have candidates for the impending MEP elections who are doctors. People should choose wisely when it comes to these elections. One day or another everyone will be a patient. Lawyers always make good parliamentarians, but experience has shown that they are complemented by doctors, who, it can be quite confidently said, have a greater ‘feel’ for people’s needs. They come into contact with people when they are most vulnerable, and many doctors, due to their work, come into contact with people in their homes or clinics on a regular basis, building the phenomenon of the doctor-patient relationship. So why should we bother at all about this area; why mention the MEP elections at all?

Everyone knows by now, or has heard something about, the recent EU report on Patient Empowerment, that Malta came 23rd out of 31 countries. When I heard this I was rather surprised on the one hand, but when I thought about it, being an academic involved directly in patient rights, and having often written about the issue, I came to some reasonable conclusions. Whether the report was fair can only be speculative – but I will put this out of the way immediately, as I feel we should have been at least a little higher on the list. The report seems to have been compiled by the usual method that the EU chooses – questionnaires. Who actually filled out the questionnaire for Malta I do not know. Certainly, as the only academic in the field, I was not contacted. And one wonders therefore whether the person who spoke on behalf of our country knew, for example, that we do indeed have a Charter of Patient Rights, which was written by the then St Luke’s Hospital committee appointed for the task, and approved by the Bioethics Consultative Committee (I was honorary secretary for this committee at the time) after we made our own recommendations. This charter certainly needs updating but it is still applicable.

The EU seems to be under the impression now, for example, that patients do not have access to their personal information; that they do not have a right to a second opinion, etc. This is wrong, of course. As correctly pointed out by the Health Minister, we have an updated Data Protection Act, which covers the right to access of information, specifically for health care as well.

I have participated on two EU-funded Framework projects, (Privireal and Privileged), which deal with the EU Directive on Data Protection as applied to Health Care. In these projects we studied everything from local Data Protection Act, to Biobanks etc. The fact that most of our Act covers the issues given on the Directive quasi lock, stock and barrel, seems to have not been seen (or at least they did not get the message) by the EU Commissioner for Health. Not to mention that the right to access information is also put down in the said Charter – which includes the right to be given an explanation on what is on one’s file. Even the Medical Association of Malta has on several occasions defended Patient Rights in this regard and I remember clearly a meeting held with the late Data Protection Commissioner where MAM and insurance companies were invited and we raised the issue about concerns of obtaining hospital records by the latter. They seemed to have quite a different concept of ‘consent’ as opposed to the detailed ‘informed consent’ which is required in Health Care. Therefore the Data Protection Commissioner had on several occasions been involved directly with patient issues.

The report seemed also to be oblivious to the fact of what is actually going on – that, for example, the Medical Council has taken positive steps to update the ethical code of conduct, which of course is in regards to Patient Rights, and which is part of the Health Care Professions Act. The report is also oblivious to the fact that Family Medicine is now on the Specialist Register. To be a Family Doctor (a GP) you now need vocational training. This is not the case in many EU states. Is this not about Patient Rights – to be seen by doctors who are specialists in their area? It is the government who after all must ensure this as patients themselves may not know that a doctor sitting for a couple of hours in a pharmacy to earn an extra cent from general practice, and who is specialising in another area of medicine or surgery, is not in fact specialised in family practice. Did the report reflect that the mechanism now in place is moving in this direction?

So what is the other side of the coin? Where did we go wrong? On the one hand we may not be doing our utmost to put the right people on boards and to chair them when it comes to areas of bioethics and health care – it is these people who forward information to the EU and if they are not up to speed, then incorrect information is given. The fact that the minister has confidence in the people he or she chooses does not translate into competence. The choice of people to write a report on Primary Care is a clear example. The parliamentary secretary did right to appoint this board as he is a psychiatrist and admits needing advice on primary care. But the Department of Family Medicine of the University could have been asked to contribute officially (although some are indirectly on the committee but representing other bodies). It is the only source which can do academic studies and research in the area and would have been a great opportunity even for the department itself. I respect all the people on these boards and am certain that they did their job as best they could. But the minister had to ask me and others for personal reports. This certainly leaves many professionals dedicated in their area feeling that they are not trusted or respected.

I hear many doctors complain that they were not summoned when an area in which they have expertise is discussed. The result in the area of health care is catastrophic for patients. The boards are supposed to be the ones that communicate effectively with our EU counterparts. When persons (not their fault of course, because they may not be experts) are not up to speed, things go wrong, embarrassing the country.

I had also suggested to the former minister that we make a Commissioner for Patient Rights. This survey now shows the importance such a post would have had. Is anyone gathering information on what is going on at European level? Someone can easily answer ‘No’ to a question on whether we have legislation for Patient Rights, when in fact one could have given ample explanation of how rights are covered in other areas of the law. A commissioner would know what is going on and also push for appropriate legislation. We have also been dilly dallying to legislate – the ratification of the Oviedo Convention (on Patient Rights) was one of them for a long time and as far as I know is still pending legal advice. We can periodically issue position statements however.

We are now discussing the right to access in primary care. Several committees have been set up and they have produced their reports. What this system will look like is still obscure but certainly it should involve the right to access the same family doctor, with whom you can build a relationship. Many are deprived of this service, even though access to a private doctor is still very cheap. But providing a free service has been proved to have its downfall; the first being that you do not get to build a relationship with the same doctor, who comes to understand you and your illnesses by understanding issues like personality, family, etc which have a considerable bearing on prevention and care for chronic diseases.

Through the Bioethics Research Programme we have set up at the Medical School, we will soon be collaborating with the Faculty of Medicine in Maastricht, on cross-border primary care. When someone goes to work in another EU state, the access of secondary care is quite uniform, but the access of a Family Doctor (or a GP) can be quite confusing. We hope to make the case that access to a more uniform primary health care will facilitate the movement of workers and their families across the EU. Certainly it removes a big headache when one moves. Taking responsibility for having new doctors working in the community obliged to have their Vocational Training is an important step. Again it is not about doctors’ rights, but patients’ rights and safety. Admittedly this has caused some controversy as well among the profession. Mine is only a considered point of view.

We need a lot from our MEPs but health care issues can be truly understood by those who have been involved in the field. Certainly if one or two of our MEPs out of the five to be elected are doctors themselves, we can have access to this forum, to improve not only our own health care but to have a voice which will help bring about the necessary laws. It is not by coincidence that we scored so low; even though, as I feel, we should have fared better. There are EU states from the former Eastern block who scored better than we did when the EU commission seems to be oblivious to the fact that to get an operation done in their state hospitals, patients must bribe doctors. This fact has been revealed to me often enough by several people who come to the meetings that I attend, to be able to ascertain it and I am sure that everyone knows about this ‘known unknown’. So when it comes to health care we should be sceptical about questionnaires that seem to base judgment solely on what legislation exists. This is not the only way to see whether Patient Empowerment is respected.

The fact that the minister is concerned and has taken it into his hands as one of his objectives to rectify the waiting lists shows we are moving in the right direction. But when it comes to legislation we often get caught at cross-roads we are too afraid to cross – as happened with trying to legislate regulation for biotechnology. Perhaps the reason is that more technical people do not chair the appropriate committees and represent us in meetings at Brussels. My area of expertise is Patient Rights and the Ethics of Genetics. Yet when the Council of Europe came to discuss ethics, I was not the one to go. Even though I have high regard for the person who did go; their area of expertise was not this subject. No hard feelings! Although it would have been an honour, to go there myself for several meetings would have cost me my usual loss – that of having to close down my clinic and not finding a replacement. But this is not about me; it is about the many who can contribute in this country and do not, probably due to petty issues.

If we have not yet ratified the Oviedo Convention on Patient Rights, perhaps clear memoranda should be sought giving the EU an explanation. The reason I was given for not having a Commissioner for Patient Rights was fear that it could backfire. Of course people are going to point out flaws in the system. Some may take advantage of this. But if the track records show that the suggestions were heeded, then the job would have been accomplished. A Commissioner would study a situation like observing the EU law on having primary care physicians with Vocational Training in the community and insist that this should apply also to private practice as the government is responsible for all practitioners it warrants. I honestly think that this embarrassment for Malta could have been avoided; I also feel that MEPs can do more to lure the government to action and conversely to be good ambassadors for us. The EP is not only about illegal immigration; which also has serious repercussions on population health which have not been addressed. He/she would advise and push for necessary legislation. It is also, therefore, about a holistic approach to the country’s problems.

Pierre Mallia is Associate Professor in Family Medicine, Patients’ Rights and Bioethics at the University of Malta; he is also Ethics Advisor to the Medical Council of Malta.