Dr. Daniel Mart is a former president of the Standing Committee of European Doctors (CPME) and currently chairs CPME's subcommittee on the organisation of health care, social security and health economics.
To read a shortened version of this interview, please click here.
What does eHealth currently represent to European doctors and are you enthusiastic about it?
It depends on how you understand eHealth. It can be all electronic means - assisting or helping in health care - but 'e' also means surveillance, lack of confidentiality and loss of privacy.
For years, doctors have had a 'hold back and wait' attitude, but we have come to the conclusion that we need to be involved.
Doctors have a rather conservative attitude to change and technical evolution – they have long been "keyboard-challenged", because they were used to writing. It is difficult to transpose observations, feelings and memories from face-to-face contact with a patient to an electronic medium.
Electronic health records are still not very competent at or good for transcribing impressions, intuitions, feelings or degrees of certainty of the typical medical interaction into an electronic support. This is what differentiates health care so much from other electronic media applications. Health care has a lot to do with personal interaction. If you want to see a doctor, you want to see him face-to-face, to ensure that the door is closed and that nobody can hear what is being said, to allow patients to talk in full confidence.
eHealth is sort of invading the doctor-patient relationship and that is something you have to be aware of - doctors don't want to be disturbed. It is at the foundations of providing good health care. Through that relationship of trust and interaction, a doctor understands the patient better. Medicine is a lot about personal observation, which cannot be codified into computer records.
Where does the idea of eHealth then come from?
You can say that definitely at the beginning, eHealth was not driven by the idea of improving health care but by the idea of rationalising it to make it more efficient and productive, as well as by illusions of health care becoming less expensive. It is only after one started to ask questions like "Is it improving the quality of care and the outcome parameters?," "Is it reducing the incidence of illnesses?", "Are people living longer or better because we have eHealth?' - we are only now starting to look for the proof of these. But the issue is that we first implement something and only then do we look at whether it is really beneficial.
We have the impression that technology is taking over something which is not necessarily desirable. Doctors have always had the impression that we were implementing technology because somebody wanted us to do that. We never had the impression that we were consulted. Nobody came to ask us what we thought technology could do for us to improve the delivery of health care. No. There was just always a big market.
And if you look at the Lisbon agenda and the competitiveness of European health care and industry - we are not necessarily looking at the starting point to improve health care or the patient-doctor relationship. They are thinking how we can develop the health care industry with eHealth to the extent that is good for the European industry. We also have the impression that industry has too much influence here and has its own agenda.
What are the benefits and/or risks of eHealth?
The benefits of eHealth, even if they are not proven yet, start showing up in different studies but we have little quantifiable evidence that eHealth is improving health care, quality of care and safety of the patient.
We don't have a clear indication either on what the risk of eHealth might be regarding confidentiality of the data, its storage and access to it. The cross-matching of indexes of data is illegal, this is a principle of data protection. But how do you make sure that this does not happen? Some states are already starting to collect all kinds of databases into one large bucket. Then comes the question of 'Who can access all that data?' because those who can will have an enormous amount of power.
On the one hand we have this positive aspect of eHealth in making things more reliable and easier to access and store. However, this drive for transparency is not necessarily in the interest of the patients. The degree of transparency has to be defined by the patient. There are benefits to be expected from these advantages in terms of legibility and safety.
But on the other hand there is also a risk that we become technology-obedient. Because it is on the screen we believe it. We don't ask whether something might be a mistake, or "Who has written this in? Is this result reliable?" The problem is that once you type a diagnosis into the system, you can't get it out – and what if it is wrong?
Electronic health records could however be of interest for travelling Europeans?
I see a lot of benefit from electronic health records, but more on a local level. Because your information is more accessible and reliable because you know your providers, the labs where the results are coming from, the specialist who sent you the report. Depending on the reliability of the party that a report comes from, I know the degree of reliability of it. Medicine is nothing definite and there is also a "but" perhaps to a diagnosis. This is why we want to introduce in the electronic health records a degree of reliability and certainty – if you don't have these variables in there, it makes the interpretation and follow-up of data very difficult.
The second problem is that if you have access to a huge patient data pool, you get very soon overloaded by it. Therefore, we very strongly lobby for the fact that the data about a patient – patient-centred data – have to be under the control of the patient. It is up to the patient to decide who gets what kind of data. A patient chooses a doctor and then decides to give him access to his data. Then the doctor can download the data as part of his record on the patient.
The problem is that electronic data becomes available all over whereas if you have a single paper record stored in a specific file in a doctor's office, a third person would need to break into the office to get the data. Doctors have access codes to override firewalls to lab and hospital services and check the data of someone who is not even their patient, because the data is available everywhere. And that is the big problem about confidentiality. Data is all over and everybody can access it, that is why it needs to protected. And the only one who can give access to it is you.
How do doctors want to get involved in eHealth and what are your requirements in exchange of your engagement?
We want to be involved in eHealth. In fact, we are screaming "Please let us get involved". The problem is that first of all there is a big community out there that is very technology- and industry-oriented and is busy full time with that, with full-time PR, research and marketing personnel to check what the most interesting investments to be made are, where the market and money are. We, the doctors, are working and we have very little time and - this is our weakness - very few experts who know both sides: on the one hand medicine and the organisational procedures and structuring in practices and hospitals and regions and on the other hand structuring electronic password procedures, confidentiality and privacy issues, transcription issues about transmission of data or storage of data.
There is only a very small community that combines both. And these experts should actually be in the relevant decision-making process for strategic thinking about eHealth and implementation processes of eHealth. The thing that is missing is the strategic visionary groups. I'm not saying that industry is bad, we should just sit around a table together.
So you feel you have not been involved in the process. What should be done to engage you in the process? What do you want?
We want to be involved but in such a way that respects the fact that we cannot be there when the industry is in a four-day conference discussing hundreds of subjects for days. Attending would be interesting for us but no doctor will be away for four days when he has to work.
Has the Commission consulted you?
Yes, but it is running into the same problems – availability, presence, finding the right experts. We have difficulties in being present at all important meetings and conferences. In fact in a recent conference the Commission admitted that as doctors were not able to participate in all the conferences, it was better to go and see them in their natural environment. Industry and policymakers need to go to practices, to hospitals and take a look and talk to the people there to get their opinions and visions.
We have to do a strategy and some planning here. We are always running after some new development which then has to be implemented in health care. I would like to have it the other way around for once, to decide together what would be good for health care, what we need in health care, and let's implement that. And then we always get the answer that it is too complicated – we have something that already exists and that could be very good for you.
It would be great for once to have a brainstorming in hospitals to get them involved. We don't want to be sold a technology that is working in another framework, and not implementing our needs. Our needs for privacy and confidentiality in data transmission are much higher than in the financial sector for example. And it needs more stringent developments. We need reliability and more security and that costs. And we don't want to end up in a situation where, mainly, only the technology gets financed but not the reliability, security and availability and protection of the data.
What do you think about organisational change?
If you talk about organisational change, you need to know that we have a certain way of practicing medicine and its base is the fact-to-face contact and interaction between patient and doctor, that's the cornerstone of medical practice - and it will stay like that, be it in a practice, in a hospital or a nursing home, in a intensive care unit or an operating theatre – you want to have your doctor in front of you and interact with him. It's not going to be a machine tomorrow – believe me. Contrary to some techno-enthusiasts who want to try to do all-over virtual procedures.
But why do you want to do this? They say: because the technology is there. That's not an argument, I'm sorry. What's the benefit for a patient? This is what I call the organisational change discussion.
If you want to have organisational changes in a way we practise our health care, I want to have a thorough discussion beforehand with the profession I represent as to what benefit this is going to bring for the patient, the system or the doctors. If you want organisational change in health care through ICT you prove to me that it is to the benefit of the patient – and it is not so easy. And then let's engage in serious discussion about organisational changes that might bring upon increased quality and outcomes.
So what could these organisational changes be then?
I have no idea. That's why we need a think tank. This is something that has never been done. The way things have been done so far is that a technology has been implemented and then its potential benefits were analysed.
I want to be involved from the beginning in the decision making. Why are we, who are supposed to do this every day. not even asked what we want use and how we want to use it? Isn't that a bit arrogant?
What do you think about the Commission's eHealth lead market initiative?
We already have a big eHealth and technology market in Europe and we have quite some expertise in Europe on technologies for eHealth. But nobody ever asked us what for and why we want to do this.
According to the Commission, it is to increase the quality of health care and patient safety as well as efficiency in delivery of care, because it is cheaper and good for the EU economy.
Who proves all this? Who proves that it is cheaper? Anyhow, if people live longer and healthier lives, they have a longer life-expectancy and greater potential to be affected by degenerative illnesses (Alzheimer's etc.) that cost society a lot.
