Projet de loi relatif à l'institution et à l'organisation de la plate-forme eHealth.
General information ¶
- Submitted by
- CD&V Leterme Ⅰ
- Submission date
- June 17, 2008
- Official page
- Visit
- Status
- Adopted
- Requirement
- Simple
- Subjects
- protection of privacy data protection computer systems medical data public hygiene public administration social security information technology applications
Voting ¶
- Voted to adopt
- CD&V Vooruit LE PS | SP Open Vld N-VA MR
- Abstained from voting
- Groen Ecolo LDD FN VB
Party dissidents ¶
- Hans Bonte (Vooruit) abstained from voting.
Contact form ¶
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Discussion ¶
July 10, 2008 | Plenary session (Chamber of representatives)
Full source
Rapporteur Maya Detiège ⚙
Mr. Speaker, colleagues, this is a fairly important bill holding the establishment and organization of the eHealth platform. For this reason, I will report a little more comprehensively than usual. Usually I get to the essence very quickly, but in this case I think it can be very useful to give some feedback from people who came up from the hearings.
What has happened concretely? The committee held three meetings. There have been several hearings with actors from the field. Last Tuesday, we had a final vote on the bill. I will not explain the interventions of the parliamentarians themselves. I think they themselves have enough ambition to emphasize a few things today. In the committee there was also clearly the feeling that there were a number of comments and a number of plus and minus points. I think those people will explain it themselves.
I also leave the Minister’s response in her preface here. I will focus more on the hearings on the bill. I will also try to stick to the schedule a little and not bring up my own opinions, but follow the texts. If I forget things, forgive me, but there is also a beautiful written report. You can always consult it.
In the first hearing, Mr. Frank Robben, general administrator of the Social Security Crosspoint Bank, explained the objectives of eHealth. It would therefore be a mutual, electronic exchange of information between all healthcare actors, which should lead to an optimal quality and continuity of healthcare services. The platform is not a central data recording of personal data relating to a person’s health, but a secure system for the exchange of data.
eHealth respects and supports existing initiatives on electronic collaboration. I think of, for example, Abrumet, the Reseau Santé Wallon, and so on, as well as the private initiatives on electronic services. The use of eHealth is optional and therefore not mandatory. The personal data is encrypted in such a way that eHealth is unable to see the content of that data. It was clearly defined which healthcare providers or healthcare institutions can communicate through the system, under what circumstances, about what types of data and patients and for what duration. The personal data may only be exchanged after legal authorization or after the consent of the Sectorial Committee of Social Security and Health, or of the patient himself.
The legislation on the protection of privacy, the rights of patients and the practice of medicine shall be applied without shrinkage. eHealth is managed by representatives of the various healthcare stakeholders. The control of the secure operation of the platform is carried out by the sectoral committee.
eHealth can boast of the know-how of the Crosspoint Bank but the platform itself also has its own infrastructure, which is separate from that of the Crosspoint Bank. eHealth respects the therapeutic freedom of healthcare providers.
According to Mr Robben, the system has a number of opportunities and advantages. I will not list them all here. These can be found in the report.
There was also a hearing with the Commission for the Protection of the Privacy Sphere. Here it was Mr. Willem Debeuckelaere who explained the general position of the committee. He is the chairman of the Commission for the Protection of the Privacy.
The committee supports the basic philosophy of the bill but emphasizes the need to incorporate the necessary safeguards so that the medical secret and private life remain adequately protected. In that context, the committee requested that the draft law provide for a general provision that does not in any way prejudice the law of 8 December 1992 on the protection of privacy with regard to the processing of personal data and, secondly, the law of 22 August 2002 on the rights of the patient and the regulatory provisions relating to the practice of medicine.
The committee was of the opinion that the eHealth system should be sufficiently transparent. It recommended that the patient be granted the right to check to which persons or bodies the data is transmitted.
For the specific comments of the committee, I would also like to refer to the report.
Third, the hearing with Mr Stefan Verschuere, Vice-President of the Committee on the Protection of the Privacy. The identification of the patient is a delicate matter, according to him. In an article published by Le Soir, it was stated that access to the medical file through the use of the national register number can pose a real danger to private life. According to him, this is not the case.
The Social Security Crosspoint Bank has been using a similar system for 15 years. Therefore, the private data of citizens is not yet circulated publicly. A similar method already applies in several Scandinavian countries, including Austria and the Netherlands. The platform will function as a flow flow for data managed with controls, making tracking of the data much more difficult.
The patient will not be responsible for the data flow. It will depend on the operators that manage them. The introduction of a reference repertoire is, in their view, necessary.
There was a hearing with the healthcare institutions. One of them was the Cancer Registry Foundation. Here was Ms. Liesbet Van Eycken of the Foundation who explained a number of things. For example, she pointed out that cancer registration has been mandatory for hospitals since 2003 and that all new diagnoses should be registered according to a standard set. In 2006, an online and web-based entry system was developed by the Cancer Register. In 2007 the collaboration with the e-Healthplatform began. It can be noted that given the very sensitive data, strict security was necessary.
A state of affairs in 2008. 39 hospitals are effective users, 4 hospitals are in the startup phase. Specific registration themes are under development with a number of medical associations, for example the working group head and neck tumors and the registration of hematological tumors and so on. Cooperation with e-Health enables doctors themselves to clearly align in the registration system who can and may perform which parts of the registration and which profiles can consult certain data. For example, there is now a restriction on the component of brachytherapy in prostate cancer. Only radiotherapists and urologists can use this component. If a patient is already registered in another hospital, the system will indicate this. This avoids double work.
Hearing with the Order of Doctors. Michel Deneyer, a member of the National Council, was also present that day. He says that he could only get acquainted with the content of the bill when it was published on the Chamber’s website. So far, the National Council has not been able to carry out a thorough analysis of the e-Health project. The analysis will follow. The Order of Doctors emphasizes the importance of professional secrecy. When highly sensitive data such as health data goes into a network, it is absolutely necessary that nail-hard guarantees are built in to prevent leaks.
The patient therefore has the right to a sealed area where the doctor can write down the data the patient asks not to share with other health professionals. In most electronic files, according to the Order of Physicians, there is no place for storing personal notes, which makes professional secrecy vulnerable.
The patient’s consent is essential for the processing of his personal health data. According to the Order of Physicians, the patient should be informed in particular about his rights and the precise purpose of the processing. The centralized administration of a single authority has little confidence in the Order of Physicians. The interconnection with the Cross Point Bank, both in terms of staff and managers, is far from the content of the concept of “trusted third party”.
As a conclusion, they argue that the exercise of balance to circulate health data without damaging the trust of physicians and patients is one of the major challenges of the eHealth platform.
Then followed a hearing with the National Intermutualist College. As a delegate that day, Mr. Justaert was present, from the National Intermutualist College. It concluded that agreements are made between all healthcare actors on how data exchange can be carried out in a transparent, secure and harmonised manner. It is a platform that will perform user management.
As an illustration of the cooperation between eHealth and the association eCare, which is also established by the bill, Justaert takes the following. For example, the rheumatologist goes to the web application for a medicine. Through that application, he can apply for a refund of that medication to the advisory physician of the health fund on the official form available online. On the basis of this information, the advising physician may grant an authorisation.
eHealth and eCare will therefore provide for an administrative simplification by abolishing paper.
Also for the patient eHealth offers opportunities. For example, the patient will be able to request his vaccination data via eHealth from Vaccinnet. If no eHealth platform is built, this will ⁇ be developed in the future through private firms, with much fewer guarantees regarding safety, transparency, standardization in a generic model.
There was also a hearing with the representatives of the practitioners of a health profession. The start shot was given by Mr Marc Moens, Vice-President of the BVAS.
According to Moens, taking advantage of the long-standing government crisis, a draft law on the eHealth platform was secretly drawn up to replace BeHealth.
The BVAS is convinced of the need for a well-functioning electronic system. However, there are two conditions, safety and trust. The BVAS considers that not both conditions in the draft have been sufficiently fulfilled. The eHealth platform should be fully independent of existing structures and institutions. The eHealth platform is understood as a public institution with legal personality and must have its own staff according to the BVAS. Furthermore, it is superfluous and not even appropriate to regulate the workforce in this bill. It is also essential for them that the doctors are involved in the negotiations on the administrative agreement.
The BVAS considers it unacceptable that eHealth acts as an intermediary organization. The very first requirement is independence from the sending and receiving side. According to Marc Moens, those who collect, perceive the role of TTP, merge data, forward and even process are not independent of each other.
The perception of the design is that eHealth will exclusively serve to facilitate government and mutualities life and increase their control capabilities. According to BVAS, doctors who prefer to work with a non-state instrument will be victims of the competition that the government apparently wants to create with this design against other IT providers.
Then there was the hearing with the Forum des Associations de Généralistes. Mr Jean-François Souppart, the President, was present. He fears that everything is already written down and arranged in advance. According to him, the Réseau Santé Wallon, the RSW, has developed a procedure involving almost all Welsh hospitals, laboratories, clinics, specialists as well as the general medical circles. The RSW has managed to define a procedure that is in accordance with the legal and deontological requirements.
The speaker had a general confidence in the RSW and in his Brussels counterpart, the vzw Abrumet. The medical circles are actively involved and are widely represented in the decision-making bodies.
This, according to Mr Souppart, is a huge difference from the eHealth platform project, which develops its applications without consultation with the relevant health care practitioners and which considers sharing the encrypted data with Public Health, the Knowledge Centre, the RIZIV or the health funds.
The underrepresentation of the medical corps in the management committee is, according to Souppart, disturbing.
President Herman Van Rompuy ⚙
Your report is complete.
Maya Detiège Vooruit ⚙
I am already on page 30.
President Herman Van Rompuy ⚙
I am not sorry, but it is complete.
Maya Detiège Vooruit ⚙
I read until half one tonight.
The speaker fears that Parliament is in the same situation as the healthcare providers and that it is forced to approve of an accomplished fact. As they are now understood, the concentration of a large number of powers in an institution to be established, the underrepresentation of the healthcare providers in the decision-making bodies and the uncertainty about the methods of operation, the vision of the doctors confirm that this draft law is not sufficiently elaborated and requires in-depth consultation.
Then I come to the hearing with Mr. Bart Van den Bosch, professor and director of information systems at the UZ Leuven. He points out that the eHealth platform is a platform in the sense that it facilitates applications and is not an application in itself. The eHealth platform can provide a number of basic services. There is a great need here. Many local initiatives repeatedly find out the wheel, which is costly and risky. Many smaller groups do not have the knowledge to work out that well. The tendency to save on security is huge. Few or none make the effort or have the money to set up the right legal framework for this.
According to Professor Van den Bosch, there are also a number of enormous benefits, both for the patient and for the hospital or other healthcare institutions.
Technically, it would also be much easier to connect. eHealth can, for example, provide one way to establish a basic connection. In the current situation, this is just different for each application because each uses its own technology, which introduces unnecessary complexity and double development and increases the likelihood of errors.
The technical threshold for administrative simplification will be much lower. He considers the National Register Number a good choice as a unique number, because the creation of a separate health number would result in healthcare institutions having to create a file with both numbers for all patients.
Then I come to the presentation of Professor Yves Poullet, Professor at the Facultés universitaires Notre-Dame de la Paix in Namen. As you can see, there were a lot of people at the hearings.
According to Poullet, the bill teaches that the government will further strengthen the grip of social security on healthcare. However, it is strange that the Social Security Crosspoint Bank plays such a dominant role in managing the platform.
The general administrator of the cross-point bank is responsible for the daily management of the eHealth platform.
Then we had a hearing with the administrators or developers of similar projects.
Lawrence Cuvelier of Abrumet spoke briefly about the Abrumet project. It is a Brussels telemedicine association that was founded five years ago. He emphasizes that the main physician has a role as a coordinator of the patient dossier. On simple request, the general doctor will be shown the various diagnoses and treatment stages that the patient has undergone. He is the only authorized to do so.
The project also shows similarities with the Réseau Santé Wallon. The speaker is convinced that the type of projects developed in cooperation with the general physicians will not be able to be replaced by projects imposed by law.
Then we had another hearing with the representatives of the network of the Flemish Region. This was Mr. Chris Van der Auwera, general administrator of the Flemish Agency Zorg & Health. We need to urgently address gender. I see Mr. Bultinck knocking.
Mr. Van der Auwera says that since the patient is central, the various care actors are obliged to work together. The challenge is to make the different modules communicate with each other. According to him, there is a need for a single indicator, this is the identification number of the social security. The eHealth project is relevant insofar as the technology works well. It is not at the federal level, but since 2006 there is already a similar system in Flanders, the GezIS.
I now come to the last hearing, namely that with the Réseau Santé Wallon. Philippe Olivier, the Chairman, has primarily given an explanation on FRATEM and the Réseau Santé Wallon itself.
FRATEM has been working on medical-electronic mailboxes for 13 years and manages more than 5 million medical messages annually. In this regard, it is the eHealth operator in Wallonia. FRATEM accounts for 95% of the hospital beds in the Region and is officially supported by the Fédération des Associations de Généralistes.
The Réseau Santé Wallon has always been a requesting party for cooperation. This cooperation has also been effective for a long time, in particular with Abrumet, with the Gents Hospital Consultation and with MediPortal. Moreover, there has recently been an extended cooperation with the Stichting Cankerregister and with the e-Care project of the RIZIV and with the e-Healthplatform.
E-Health has been in development since 2005. They consider that the project should be challenged, as there are still numerous vagues and justified questions.
This was a report from all hearings.
The draft law was finally adopted on Tuesday 8 July 2008. All parties approved the bill, except for the Vlaams Belang, of which the two committee members abstained, and Ecolo-Groen, of which one member abstained.
Daniel Bacquelaine MR ⚙
Mr. Speaker, Mrs. Minister, dear colleagues, the objectives of the text on which we are to speak today are – I think – widely shared.
The first objective is to register with the technological progress. There is no reason for any material to escape. Currently, a lot of data is exchanged between different healthcare providers uncontrolled and unsafe. I say it from the beginning of the game because it is often forgotten. Paper versions allow for all derivatives easily. Therefore, we are ⁇ right to join in the path of modern technologies in the field of data transmission.
The second objective is simplification. It is with force that service providers claim the administrative simplification and the saving of time in terms of administrative tasks. I also agree with their point of view because I consider that administrative simplification is necessary in a number of areas; I think in particular of the prescription system of medicines. If we can, thanks to the eHealth platform, promote administrative simplification, so much better!
The third objective is the quality and safety of care, especially for patients. A secure and well-organized electronic data exchange between healthcare providers can, in my opinion, effectively increase the quality of care and patient safety.
Now to the method. It must be agreed that we are faced with a certain degree of dissatisfaction from future users and that many healthcare providers legitimately, and sometimes justly, ask themselves a whole series of questions.
We are facing a method problem. Let us not hide it. This could have been the subject of more discussions.
In addition, professional associations could have been earlier and more strongly involved in the genesis of this project.
By expressing this regret about the method, I would like to make sure that this does not constitute a precedent. It seems to me that in the areas of public health, one should always try to make sure that healthcare providers associate with the project and consider it as effectively useful and necessary for their own practices.
Here, obviously, it is not this feeling that prevails, since, even today, we receive a communiqué signed by all the trade union organizations of doctors, by the Order of Doctors and by the societies of medical telematics. There is therefore a doubt, a concern, an apprehension in this file, about the use that could be made in the future of this electronic platform.
Having highlighted the lack of concertation, a number of things must now be addressed on the substance of the case.
This doesn’t seem to have been well perceived by users – if the consultation had been more pushed, they would probably have been able to incorporate this dimension – but the use of the eHealth electronic platform is optional. Healthcare providers and healthcare professionals are not forced to use this platform. By saying this, I want to reassure but I realize that if it is not used, it will gradually become an empty shell. As much as it is necessary not to constrain the use of this platform, so much should be encouraged its use.
In order for it to be used, it seems to me that it is necessary to recreate a sufficient climate of trust among healthcare providers and healthcare professionals towards the system. We must give them all the guarantees they expect and make sure that a genuine concertation starts even when we are going to vote on the text today. This text will be sent back to the Senate, which will probably discuss it. Therefore, there is still an open period to promote genuine concertation and remove some uncertainties.
Healthcare professionals tell us that this text includes, in a number of cases, the possibility for the executive to force doctors and healthcare providers to use the eHealth platform. This is obviously not accurate. The issue was raised in the committee. Only public institutions can be forced to use the platform, but independent healthcare providers and healthcare professionals will not be forced to use it. They will only do so if they have sufficient confidence in the system.
This is why we have submitted a number of amendments to the original draft text. These amendments were submitted by a majority. We have made a very large contribution to this, so that the text is improved in terms of the confidence it generates in future users. The main points of these amendments concern, in particular, the Platform Users Consultation Committee. This committee will be chaired by a doctor. This is the result of a majority amendment and it is an important achievement capable of reassuring service providers.
Other majority amendments address key points: the designation of the seven providers of the management committee by the medical bank of the life insurance committee of INAMI, the development by the platform of a data encryption system between the sender and the recipient, etc. The system lock has also been strengthened, namely the intervention of the “Health” section of the Sectorial Committee of the Privacy Protection Commission. This is an essential element because, from the beginning, the text provided that this section "Health" was a major element in terms of permissions to use the system. This committee was not yet established in its definitive form. From now on, it will have to be. Otherwise, it will not be able to give the necessary permissions. This sectoral committee must therefore be effectively set up to ensure the implementation of the system and data communication can only take place with its consent. Furthermore, the composition of this committee has been expanded by an additional medical member.
Finally, an evaluation of the law has also been planned and will be carried out within two years of its entry into force, to adapt it, if necessary, or to make it correspond to the needs that would appear in the course of application. In order for this electronic platform to be a real advantage for users, it will need to demonstrate its strengths, in terms of quality, security, confidentiality and privacy protection. If this is not the case, the healthcare providers will not use it! The best indicator, which will judge the effectiveness of the text that we are going to vote for, is the use that will be made of it!
If, through the necessary consultations for its launch, the users are not sufficiently reassured, then we will have to establish the need for a modification of the text. This possibility should be admitted today, as the matter is new to some and so the sphere of technology and electronic platforms can still raise concerns, or even anxieties about the use that can be made of it in final.
I will bring this debate closer to the one we will talk about just now: electronic voting. I hear that some – and it’s sometimes legitimate – feel some suspicion about electronic voting. I find, and it is somewhat paradoxical, that those who most express their mistrust towards him are also those who strongly defend the electronic healthcare platform.
Both aspects generate anxiety, concerns and questions regarding the guarantee of our self-determination with regard to these systems that centralize data, transmit it and facilitate exchange.
We will still, and ⁇ for a long time, face this kind of questioning. However, when they concern health, domain one can no longer private, it is quite logical that these issues receive an even greater intensity. Users are therefore necessarily entitled, on behalf of their patients, to obtain all guarantees of confidentiality; thus we will have to demonstrate that this electronic platform can be used in the collective good, i.e. both that of the providers of care through a simplification as well as of the sick and patients who have the right to the guarantee of a privacy.
I believe that there will still be a good dose of pedagogy to reassure both users and patients.
Yolande Avontroodt Open Vld ⚙
Mr. Speaker, Mrs. Minister, Dear colleagues, I can of course not duplicate what Mr. Bacquelaine has said, although there are, of course, interfaces. Collega Bacquelaine is a doctor, like me, and he is a liberal, like me.
If we know that the present draft may eventually become one of the most important designs for the future and that it may have been included in most party programs, then I think this is a very big step.
But – I return to what Mr. Bacquelaine said – there is also another unicum. Today we, ⁇ all, have received a joint letter from all Belgian medical associations that our country is rich. Per ⁇ it is a prime that there is for once absolute unanimity between all medical associations, both the scientific medical associations and ...
Minister Laurette Onkelinx ⚙
The [...]
Yolande Avontroodt Open Vld ⚙
I do not know, Mrs. Minister. I think the joint writing was not really a big success. Mr. Bacquelaine approached this with “velours and gloves”, as would be expressed in Antwerp.
The fact that there is unanimity is a signal that we should take it seriously.
I will keep my presentation very schematic. I will not repeat what Mr. Bacquelaine has already said.
I will focus on the four crucial “but” points. These are four issues that still raise great questions today.
Before I get to those four points, I would like to thank my group chairman Bart Tommelein and my young colleagues Sofie Staelraeve and Willem-Frederik Schiltz – who are not all here now. For one time, neither Katia della Faille nor I were present in the committee. Mr. Goutry said that the discussions all went much more smoothly.
In this respect, I would like to thank the colleagues who were there.
What is Positive? Very positive and a very important signal, Mrs. Minister, is that the entire sector is of course won for a secure exchange of medical data. In that one positive sentence is already one of the elements in which so many big question marks are around.
You were there, Mrs. Minister, and it characterizes and adorns you that you truly listen to the experts present at the hearings. But medical data, the correct definition of what those medical data are about, there are still a lot of questions about it. They would have preferred to see it beautifully delineated and beautifully defined. I think, Mrs. Minister, that the answer you will give here in the plenary session on taking care of the proper delimitation could already be a very large part of the solution. That is ⁇ the essence of the unrest that still prevails around it.
I asked this question to Mr Robben during the hearing. His response was that he referred to the Law on Patient Rights. You have also received the text because of, among other things, the Flemish Patient Platform and also they are concerned. For what is the definition of these medical data?
There is also the informed consent. That is of course important. The informed consent is the key to respect for privacy, the key to be sure that one will do nothing that eventually mortgages privacy. But this is a theory, Mrs. Minister. Mr. Block has just arrived. If she comes to someone in the field with her doctor’s staff, for example a patient of 80 or 85 or 90 or 100 years old – Mrs. De Block has many good, loyal patients – then it will be her responsibility.
She must be able to receive that informed consent from her patients, but it will ultimately be her responsibility to have it. It is a concern that lives. This law is just a platform. The decomposition of these medical data is the most disturbing one today. Unfortunately, it has not yet been removed. Despite all communication, despite all the insurances that have been included in the explanation, the unrest surrounding that delimitation has not yet been removed.
Yvan Mayeur PS | SP ⚙
I hear your words, Mrs. Avontroodt, but what do you say then to the doctors who fill out a computerized file after auditing their patients, file in connection with an acute hospital? It exists today and such a file is not protected everywhere. The Privacy Protection Commission claims that protection is insufficient and that the e-Health platform will provide additional security. I understand the concern about modernity, changes, new technologies, but I do not understand it in this case, since the method has already been applied in our country for a decade by many practitioners.
Yolande Avontroodt Open Vld ⚙
Mr. Mayeur, I can answer you in one sentence. Ultimately, it is precisely the possible intertwinment of data from the Social Security Crosspoint Bank with medical data, which is causing unrest.
You are right that medical data today circulates through the electronic medical file in both hospitals and between hospitals and general physicians. However, here it goes on. On the same “carrefour” one is going to create theoretical uncertainty through the interconnection with the social Crosspoint Bank. You know very well what this hits. Again, this is a theoretical possibility. As it applies to critical scientists, one asks for the greatest clarity of that possible interconnection; one asks that that interconnection would not exist.
This, Mrs. Minister, is one of the concerns, although I am very pleased that in the committee, thanks to the submitted amendments, a very large approximation has been sought and found among the members of the committee in order to deal with this unrest.
Finally, Mrs. Minister, I urge you to do the following.
If you try to give a concrete implementation to the benefits of the eHealth platform very quickly with the effective administrative simplification that this makes possible, and if it is delivered very practically and very quickly to the healthcare providers, I think that – knowing your drive – the eHealth project of our country will have a greater chance of success.
The following cannot be denied. Unfortunately, we already have more experience with such initiatives abroad, both in the Netherlands, Germany and France. There it has remained the dead letter to this day because of the too low participation of those for whom you do it, the health care stakeholders, namely the patients and their right to quality.
Therefore, Mrs. Minister, I urge you to promptly work on the practical applications of the present law with a view to the administrative simplification. Then gradually the confidence will surely and surely grow.
Our group will support the project for the future-oriented vision behind it.
Marie-Martine Schyns LE ⚙
The eHealth platform has three objectives: optimising the quality of care, simplifying administrative formalities and supporting health care policy. Since the beginning of the project, the a priori are tense and two logics have continued to follow parallel courses.
During committee hearings, experts confronted their arguments, attempting to bring points of view closer, but all the reluctance could not be smoothed. Several speakers still believe that security and data protection and medical compliance are not yet truly assured. Of course, these derivative risks are not the appendage of an electronic platform and may also exist in paper version.
However, the rapid flow of electronic information increases the yields and especially the possibilities of overlap. We therefore understand these fears for sharing them during the hearings; the descriptions of the application and the possibilities of recovery, especially with Banque-Carrefour, have broadened our perspectives.
Through committee work, amendments have helped to correct the initial project by improving data security with encryption proposals, which we consider essential. A greater place was also given to the representation of doctors in the control bodies, in particular for the follow-up reserved for the information collected.
At these committees, we insisted and insist again today on the importance of consultation with the various actors, the associations of physicians, but also the existing networks both in Flanders, Brussels and Wallonia. All of these networks have developed expertise, which will be useful in the implementation of the platform.
The evaluation processes during the construction of the project, during the very course of implementation, seem really imperative to us. Because what is the key, Mrs. Minister, to the success of eHealth is the trust, which will or will not lead to the success of the platform; the trust of users and patients with regard to their privacy, but also the trust of doctors who expect this network to keep public health goals, of improving care and not of control.
Therefore, there is only one solution: amplify the consultation with them and put all technological means in place to secure all the data. It is only at the price of trust that users will then use the tool.
Koen Bultinck VB ⚙
Mr. Speaker, Mrs. Minister, Ladies and Gentlemen, I would like to outline the general cricket lines. You undoubtedly know the vision of our group on social security and health care. Of course we take – let it be clear – nothing back. We continue to advocate for the division of social security and for the transfer of all health care to the Communities.
With the same concern, Mrs. Minister, and encouraging it, we continue to oppose the deforestation that still exists in this sector. I think it is useful for us to repeat that from our group – we are gradually the only ones who dare to say it.
I come to the draft itself, Mrs. Minister. The design has gone a very long way. Can I pay your attention, Mrs. Minister? In the medical corps, there was initially a great fear for the eHealth platform. The whole medical corps was afraid of a kind of Big Brother in medicine. Since then, the dossier has evolved considerably. I must honestly acknowledge, also from the opposition, that many amendments have been submitted to the draft which largely address the concerns of the medical corps.
It will be crucial, Mrs. Minister, that the quality of the implementing decisions will be taken into consideration, because the essence must be revealed here – that is the case with an important framework law. How concretely will some things be translated? However, there are problems in this file, which must be resolved by implementing decision.
Mrs. Minister, the colleagues who have followed the file and know it, know that the famous eHealth platform is not a new consideration. Also your predecessor, Minister Demotte, has already outpaced an eHealth project in the previous legislature. He stopped that then away in a bill containing various provisions. Now we have the positive evolution that the project was removed from the new bill containing various provisions and that the Parliament, thanks to quite a few hearings and through a broad amendment, was able to hold a serious discussion of the draft. That is important to say.
However, there are still a number of problems. I would like to return to the next one. Despite the fierce criticism that there was from the Order of Physicians, the Syndicate of Flemish Home Doctors and Domus Medica that the latest hours are much more moderate because they have met their expectations, there are still a number of problems. I mention two.
There is very clearly the demand for proper protection and strict alignment of the privacy of medical data. I cannot emphasize enough that we will need to provide with the necessary privacy measures and the necessary protection with regard to the highly sensitive medical data.
A second problem that remains with us, Mrs. Minister, is the enormous concentration of power in the hands of the designer of the system. We have known the designer of the system, the great man of the Social Security Crossroads, all as being technically very well informed. However, this does not exclude that, from a healthy democratic concern, we must provide for sufficient democratic control, so that the concentration of power, even if it is a technically highly competent man, can not give rise to abuse in that sector.
Everyone has a full mouth today about the importance of the electronic medical record. The Flemish Interest Group will therefore also take a constructive stance in this case today. If we want to be serious about serious data and the serious transmission of electronic data, based on transmission via an electronic platform, then we need to go a bit with modern technology and then there really needs to be a kind of e-politics. However, it is essential to ensure sufficient control so that there can be no abuse in this file.
It is a matter of security, Mrs. Minister. It is a question of trust. Part of that confidence you have tried to win from the physician corps, by making the system voluntary.
Today I want to ask you a concrete question. From the Medical Corps the confirmation is still asked in the most recent writings – hence I would like to receive confirmation in your response today – that it is indeed intended to make this system permanently function on a voluntary basis. I would like to receive a reassuring response for the Medical Corps today.
That is the only really very essential question: can you guarantee us today that the application and use of this platform will be permanently on a voluntary basis and that one will not, after all, through the introduction of a number of implementing decisions, eventually yet and steamlessly compel the doctors to step into this system?
A very important element – which was also shown in the hearings – is the interaction with the existing systems at the Community level. You know very well – even the colleagues who have followed this dossier know this – that at a number of levels, including at the level of the Flemish Community, there are already well-functioning information systems, which makes the transmission of such data possible. It is crucial – I have also asked you about this in the committee – what will be the content of the notorious cooperation agreements that are yet to be concluded. This is a crucial given. How will one attempt to establish the cooperation between, at federal level, the eHealth platform, which we will approve today, and the systems that currently exist at the level of the Communities and the Regions?
I am very pleased to welcome our colleagues from the N-VA. Especially on the eve of July 11, I would like to step back to my classic role of good flamingos and point out some language sensitivities. We have witnessed that the majority submitted a crucial amendment to ensure that in all sub-sectors a male more was suddenly dropped, with the sole aim of introducing language parity in the respective sectors.
I must honestly say that I, I am addressing this to the colleagues of the N-VA, to say the least astonished not to say shocked to see that the N-VA signatures were under that amendment, which sought language parity. We will do the test later. I will make it easy for you on the eve of July 11. We will submit two Community amendments. The vote on those amendments will be crucial to see the difference between political credibility and practice and political credibility and theory. We will try to remove language parity from the law. I hope that the N-VA today has the courage to put the money and mandates aside and to support the good amendments of the Flemish Interest to abolish the language parity.
We will submit a second amendment to the title, Mrs. Minister. As good flamingos, we also have a permanent problem with the English-language title and the entire English-language usage that pervades this design. There are enough Dutch-speaking and French-speaking terms to solve this problem.
In this way, I immediately defended our amendments. We will give the Chamber the opportunity to replace the English-language title with a good Dutch-language and French-language title. This also addresses the language sensitivities, which are in place on the eve of 11 July.
The problem with this design is that the entire structure is and remains a vzw structure. Just as I pointed you from a democratic concern to parliamentary control to the concentration of power in the figure of Mr. Frank Robbe, I would like to point you to the problem of the vzw structure. Every one of us who is active in politics at the local level knows that it is also becoming a classic trick to work away with the democratic control of the municipal council, namely by stopping away many things in vzw structures.
Mrs. Minister, I express today, in my capacity as a member of the Flemish Interest, my democratic concern and would like to make the same comment on your vzw structure. I still fear, on behalf of my group, that the aforementioned structure will give us, members of Parliament, insufficient control capabilities. For us, this remains an important problem.
Mr. Speaker, Mrs. Minister, I am going around.
We are fully aware that each of us must take steps in a healthy e-politics and follow up with its time. On the other hand, we take note of the concern of the Medical Corps, which has been partially and significantly addressed.
In addition, of course, we continue to advocate de-federal sources of health care. Therefore, the Flemish Interest will abstain from voting on the draft.
It gives us insufficient satisfaction. On the other hand, however, there are not enough arguments to vote against the draft.
Luc Goutry CD&V ⚙
Mr. Speaker, colleagues, Mrs. Minister, Mrs. Secretary of State, we deliver here today, as we did in the Committee on Public Health, important legislative work.
It is important, legislative work, because the platform must be good, legally correct and safe. It is about important matters, which have to do with people and information about people. In addition, it is also important, as the platform must be a pillar of our health care policy now and in the future. It’s about how we deal with the enormous amount of medical information, which is so sensitive and personal.
At the same time, it is also important that the aforementioned information is transmitted properly by the healthcare providers, where necessary, to the extent necessary and in the necessary manner. It is important that the information is transmitted, because today everyone knows that in our health care system a lot of money is wasted on unnecessary surveys and on surveys that are done two to three times, such as radiographies, clinical examinations, laboratory tests and blood tests. This happens in the absence of information, because the intended information is stored very partially and sometimes incomplete. Sometimes it is also not transmitted. Such causes a cascade of research, which costs a lot of money and at that point, in fact, does not add any efficiency to health care.
Design is a model for the future. It is, by the way, a model that we will now launch in our country, but that will also be extended internationally. It cannot be otherwise. It is a future development, including in Europe, where health systems will need to be aligned.
It is also historical work, as was once the case with the Crosspoint Bank. The establishment of the Cross Point Bank in the early 1990s was also a historical work.
I was also involved in the creation. I still remember that there were doomscenarios then. People thought that the Cross Point Bank would create Big Brother states and did not want to start it. By placing all the data of people in a bank and then connecting all the banks together, one would know everything about everyone.
What do we see today? About twenty years later, we can no longer think of the Crosspoint Bank out of the social security. It is a closure and a foundation of social security. Through the Cross Point Bank, we can gather the social data of people and link them to tax data, so that records of people can be quickly compiled and certain rights can be automatically granted to people, thus avoiding a flow of administration and paper.
Has the cross bank worked well so far? I would say that she has worked very well. Everyone is convinced of this. The Crosspoint Bank has also worked safely, because so far there are actually no accidents known, although on that platform many millions of data are interconnected.
The fact that the eHealth platform is built using the same model and will even be managed by the same people as the Cross Point Bank, I am already quite reassured. It will be established by people with experience, who know what they are doing. We strongly support this system. I have never put it under chairs or benches, nor before. I am a strong supporter of such an electronic platform for medical data. It is a necessary tool because we will also be able to extract policy information from it. So it is not only in the benefit of the doctors, who can therefore quickly start therapies. It is also not only for the benefit of patients, who can thus be treated more effectively, but it is also for the benefit of the government, the minister and the Parliament, who – for security reasons – will be able to receive anonymised data, which allows us to check whether health care is performed in our country in an efficient way.
Based on statistics, we will be able to see whether we are doing well and whether the money that is invested by the community through social security is used properly. It is a moral duty of politics to engage in it, to inform itself and to evaluate whether health policy is being developed properly.
It is a mature, thoughtful proposal. I think that great efforts have been made to involve everyone. This is always with a time limit. One cannot continue to argue about texts forever, but there have been hearings. I think everyone has been given the opportunity to express their opinion on this. The rapporteur also mentioned how the hearings went. I would also like to thank colleague Detiège for her detailed report. That has been a serious work on such a design, but you are writing history, colleague, because this is a pillar in our health care policy.
Of course, I understand the anxiety and concern in people. It must be there, because it has to do with ethics. One is concerned about the way we deal with sensitive medical information about people. That concern must also force us to be outstanding, to put our latter very high and to adhere to the highest safety standards. I think we have guarantees for that. Whoever examines the law sees that it is filled with review systems and committees – user committees, sector committees – who must intervene everywhere to set up the procedure, monitor the security and validate what will happen in the system. That is so many keys in different hands, which ensure that the system itself can be labeled as safe.
The system also relies on volunteering. No one will be forced to enter the system. The system works end-to-end, from the sender to the user. Everything in between is encoded and is unreadable. Medical secrecy can never be violated.
The doctors have rightly asked to be prominent in the system that concerns them and that has to do with health care. We listened to their questions and held conversations with colleagues across party boundaries. Ms. Detiège supported our amendments, for which I thank her. After all, it was a constructive meeting in which we helped each other to come to a good workpiece.
These amendments would give doctors greater powers and participation and even more explicit involvement in the system. I think this is important. Colleague De Block and other colleagues-doctors, if we can't strain the doctors for the cart, we don't have a good system. That is obvious. Businesses can be forced, but they must be used by the healthcare providers voluntarily and with pleasure.
The case will have to be dealt with expertly. I am reassured in that. The case will need to be constructed very carefully. However, thanks to the encryption, the encryption and the additional security, I don’t think this will be a problem.
It is also a question of ethics. This data must be handled ethically. Therefore, this system is nothing more than a platform. It is not a database where one could break into and look at everything, like someone who opens the closet doors. It is just a connection platform, a facilitator that allows data streams to cross each other, that data can hook up to each other and can be sent where they should be.
The eHealth platform will therefore not, like the Crosspoint Bank, make a large own data storage so that there can be no intrusion into it and there is no security problem.
Colleagues, we have discussed in the committee that this proposal – fortunately – is supported by the legislation already existing today in the leaning parcels. I am talking here for example about the privacy law, which has been in force since 2002.
This means that we can safeguard this system together with the Cross Point Bank. After all, we already have a law that ensures the security of private, personal data thanks to the Privacy Protection Commission.
Within that Commission there are numerous committees that assist in monitoring the security. The system connects to each other, is compatible and will therefore also ensure surveillance.
Secondly, the Law on Patient Rights regulates the participation and rights of patients, the right to access their files. Through the reference registry in this system, patients must decide themselves what happens to their data. Without the knowledge of the patients, certain circuits cannot be drawn up with the data that concerns them. Patients are at the center of the event.
In this regard, we have consulted with the patient platforms and obtained their cooperation. They also see that this is a good thing.
Ladies and gentlemen, I want to decide. CD&V - N-VA is pleased that this system is being created. It is important for us to establish this system. We see it as a pillar in our healthcare system. It is an advanced system. We are a leader in this regard in Europe. That is good because others must then focus on this system and we can then further indicate the tone.
Also with regard to the ISO standards, the quality standards that have been built in, one can go a long way into that. You can impose it on others. If one complies, one must, of course, accept what already exists. Patient involvement is validated and doctors can clearly participate in this. As policymakers, we will surely benefit from this and be able to obtain additional data from it.
In that sense, we will support this draft with a confident heart. We are also looking forward to the implementation decisions. We now have a kind of framework law, which is important, but of course there are still many implementing decisions to be drawn up. The Minister will undoubtedly endeavour to write the implementing decisions quickly so that the system can actually take effect. Mr. Speaker, so far my intervention that could take place under mass interest, for which I thank you.
President Herman Van Rompuy ⚙
Mr. Goutry, thank you for this strange argument.
For the order of work, I propose the following. Five speakers are still registered for this bill on e-Health. I propose a three-quarters-hour pause before we begin with the Arms Act. Between the present draft and the Arms Act, five speakers have signed up for various resolutions. I hope to be able to take a break by 7 p.m.
by Mr. Gilkinet has the word.
Georges Gilkinet Ecolo ⚙
Mr. Speaker, Mrs. Minister, I have closely followed this exciting dossier, in collaboration with Muriel Gerkens who will join us a little later, as she represents our Parliament in Paris as the chairman of the Health Commission.
If this case is exciting, Mrs. Minister, it is also ⁇ sensitive as it relates to health data, to the protection of privacy – all personal and delicate things. I don’t want to shake the atmosphere after the brilliant exhibition of mr. Goutry, but we were surprised, or even shocked, by the very little participatory working method and little listening to the medical actors – I will return to it. I find it more constructive to address the substantive issues first.
Why do we find it important and useful to advance on the electronic exchange of medical data in a public setting, Mrs. Minister? The importance of an exchange of information lies in the aim of better healing and avoidance of medical accidents – a fairly explicit testimony in this sense had been provided to us by the representative of a Brussels medical platform for the exchange of data – and thus to avoid systematically recommencing preliminary examinations whose cost is significant for the budget of the social security. We could more easily exchange X-rays or medical examination results and thus accelerate treatments.
It would be wise to have an epidemiological statistical tool in order to refine public health policies, to gather accurate and useful information on the evolution of environmental diseases, to keep a register of cancers. During the hearings, we heard a representative tell us that the eHealth tool could help her in this regard. We will be delighted with you.
It is also desirable to coordinate field initiatives to ⁇ economies of scale, share knowledge, secure data as best as possible rather than allowing the private market to seize this object in a profitable logic. I recently asked you in the Public Health Commission about the product "Google Health". Google and other IT operators such as Microsoft are interested in this approach. Therefore, it is useful that a public initiative exists.
As I will be critical later, I would like to say first that we largely share the objectives of this project. We find the method of work ⁇ critical. Like the mr. Bacquelaine said, you have managed the exploit of making unanimous opposition to the project in all medical associations, from ABSyM to medical houses, whose approaches are quite different, and from the North to the South of the country, which is even delightful in the current context. Per ⁇ even you will be able to make the synthesis! Their opinion is not ⁇ praiseful, although I do not take it for cash, I hurry to clarify it.
It is interesting to cite some points, however: "this bill clearly lacks precision, constitutes a blank check as long as it remains vague as regards the scope of the law." This notice, Madam the Minister, which is ⁇ severe and which we all have received in our e-mail box, is the result of a lack of prior consultation. He denotes a discomfort of which I am surprised that you do not attach more importance to him. How can we imagine the successful implementation of this project without relying on the support of those who are at the base of medical information, produce it and disseminate it? Worse, they risk not participating in this project or sabotaging it.
As Mr. said. Bacquelaine, either this project will serve nothing, or everyone will be forced to use it, since there is a constraint of fact.
Ministre Laurette Onkelinx ⚙
If you have seen the file, since you criticize the method, you can see that I have removed the draft of a law containing various provisions. We conducted hearings, many amendments were accepted, dialogue took place. If you have followed all this and if you have understood the file, you can remove from it that there is no constraint.
Georges Gilkinet Ecolo ⚙
Based on the three objectives set out at the beginning of my intervention, I want the entire medical body to participate in this eHealth project. But I also want this project to be developed on the basis of local experiences, with respect for the actors.
Today, you have created a total and massive opposition against your projects, while you would have been able to collaborate and benefit from field experiences.
This is the subject of my speech.
Ministre Laurette Onkelinx ⚙
The Ecolo group knows well that sometimes it takes time to convince!
Georges Gilkinet Ecolo ⚙
I am also convinced, Madam Minister, that the law can provoke virtue. But, in this case, there are many who oppose your project. And I am afraid that this bill will not be adopted by the forceps. In fact, I am not sure that all members of the majority will be delighted with the vote they will proceed to now.
This law will be hardly applicable on the ground, or even inapplicable, and will probably reserve many unpleasant surprises when assessing it.
You said you were going to consult the field actors. It seems to me that you said you had a date with them on Monday.
You will admit with me that this method of work is quite special.
Ministre Laurette Onkelinx ⚙
The [...]
Georges Gilkinet Ecolo ⚙
This is not what they tell me!
Mr. Minister, you will admit with me that it is special and quite curious to have a text vote and then consult the sector concerned.
Ministre Laurette Onkelinx ⚙
Mr Gilkinet, I accept all criticisms. However, you should know that they have been consulted as part of the drafting of the law and that they will be consulted again as part of the enforcement decisions.
Georges Gilkinet Ecolo ⚙
I disagree with you when you say that you consulted the field actors for the drafting of the law.
They came in the session, I had the opportunity to discuss with them and I can tell you that they have not been consulted on this subject.
Ministre Laurette Onkelinx ⚙
Have you followed the agenda, the work in the committee?
Georges Gilkinet Ecolo ⚙
I will not return to the eHealth text that dates back a few years. However, it is interesting to return to the course of this text.
The latter was initially incorporated into the law containing various non-urgent provisions. It was necessary to ask – and I thank you for accepting it – that it be removed so that it can be considered as an entity.
Following reactions from field actors who were concerned about not being consulted, hearings were held within three days. In these circumstances, I would like to emphasize that they have had the merit of responding to the invitation that was made to them. My opinion is that these hearings were conducted at the hussard. It quickly became apparent that most of the experts heard did not know the text in question and that they had discovered it, if not in a session, two days earlier. This, in my opinion, is a fundamental problem. Indeed, the different Regions recognized three actors (a Flemish, a Brussels and a Wallon) and gave them the means to develop their own project in terms of exchange of medical data. This was done quite spontaneously as part of an ascending approach. And at the time when it was decided to take things back into their hands – and I do not criticize here at all the fact that it was a public entity that proposed a general framework – the experiences lived, trials, mistakes, tricks and strings of the actors concerned were not taken into account. The approach could have been much more participatory. This would have helped to improve your text, but also to win the support of the aforementioned actors.
I also note that the Telematic Commission and patient representatives such as the LUSS were not consulted either.
Now there is resistance. If things had been done in order, the resistance would be different or less. How can one hope to take the support of these actors without speaking to them, without associating them in one way or another with the elaboration of the text? I do not believe.
Another fundamental problem is the inaccuracy of the text. A large number of amendments and sub-amendments were introduced at a committee meeting in response to criticism, ⁇ during the hearings, but did not address all the issues raised. You will answer me that this is the reason for being committees, that amendments serve this; everyone knows, however, that the higher the number of amendments, the more it is the sign of an unsuccessful, insufficiently matured text.
This is not a good working method. We have seen it about other legal texts. Just recently, I talked to you about the law on medical errors: it is still not applicable. This is what happens when you work too fast.
Yvan Mayeur PS | SP ⚙
I think all of this consumes a huge amount of our time, but does not say what you think at the bottom of the law. If you want us to talk about the method and procedure, I can explain how Ms. Gerkens chairs the Health Committee; do you want it?
Very frankly, beyond the method, after hearing what you thought, or rather what you say that others think, we would like to know what you think of the text. What is your opinion, what are your amendments, what are the improvements you want to make? I look forward to them and would like to hear them.
I heard Mrs. Gerkens confess that she didn’t have time to read the text and that she left us in the middle of the commission to go do something else. We could then finally continue, move forward and vote on the text when Mr. Goutry has chaired the committee in a much more efficient and efficient way.
Now come to the bottom and tell us what you think! On the method, you have no lesson to give when you have responsibilities; just see the situation of Mrs. Gerkens at the head of the Public Health Commission!
Georges Gilkinet Ecolo ⚙
Mr. Mayeur, I recognize here your legendary elegance: Mrs. Gerkens is absent because of a mission abroad. I attended the committee’s work, in particular the hearings: all the actors praised the quality, the humor and the tact with which she animated this committee. The same goes for amendments. It is not a committee president who is being criticized. I understand that it annoys you that I criticize Ms. Onkelinx’s work, but you use arguments under the belt.
Moreover, in relation to my opinion on this text, I have expressed it from the outset: I find it useful to have a system for the exchange of health data that is public.
Yvan Mayeur PS | SP ⚙
What is it under the belt? I simply say that the method you criticize is not frankly the one you apply, you, in commission. I don’t know what’s under the belt.
I simply say that we have worked correctly on this bill, that we have been able to move forward, that it is a good bill, that everyone has been able to speak out, that amendments of the majority have been submitted to correct the text. I really don’t see what you have to blame for our way of working. Now, I would like to know your opinion on the bottom: what do you think about the bottom?
Jean-Marc Nollet Ecolo ⚙
The intervention of Mr. Mayeur not only brings nothing to the debate but is ⁇ displaced.
Yvan Mayeur PS | SP ⚙
Mr. Nollet, where is my intervention moved? You don’t even know what I’m talking about because you weren’t present in the committee! It is true that as a group leader, you probably know everything!
Jean-Marc Nollet Ecolo ⚙
The least of the things, Mr. Mayeur, if you allow it, is to respect others when they want to intervene!
The intervention of Mr. Mayeur as regards Mrs Gerkens is completely displaced and requires a right of reply from Mrs Gerkens. Like the mr. Gilkinet said, Mrs. Gerkens was on a mission abroad. She is, for the moment, on the way to the return of the Paris meeting and I ask you, therefore, to wish to include her on the list of speakers, even though the minister must stay a little longer, the time it comes. I am sorry, Mr. Speaker, but given what has been said here, it is necessary!
Yvan Mayeur PS | SP ⚙
This has nothing to do with the Minister, but with the functioning of the Parliament! Well tried, Mr Nollet! This depends on how the work went, and you are not aware of it! You make an incident where there is no need to have it! This has nothing to do with the substance of the debate, on which I would always like to have your opinion.
President Herman Van Rompuy ⚙
Mr. Gilkinet, we listen to you on the basis of the project.
Georges Gilkinet Ecolo ⚙
Mr. Mayeur, I can repeat the three goals as many times as it turns out to be necessary, but I take a little more of your time! These goals are quite commendable and we share them, but we feel that the method is problematic.
Another thing that makes us trouble, and which is ⁇ worrying, is that this text of law rests on the shoulders of a single man. He ⁇ explained himself in the place of the Minister at the beginning of the Health Committee and it was the Minister who replied.
To carry texts of laws, of course, people are needed and we all know who carried this text. This person is ⁇ of quality, but, as Ms. Gerkens said with a bit of humor in commission, what will we do if Mr. Gerkens is a good person? Does Robben suddenly disappear?
Yvan Mayeur PS | SP ⚙
Mr. Gilkinet, he himself replied that he obviously had a team. Therefore, not everything relies on one man and the system can work without him. Your intervention makes no sense. We are talking about something serious. You cannot deny such a project of such importance! This is not at the level of the debate and the challenge!
President Herman Van Rompuy ⚙
It is not allowed to intervene without having previously asked for the word.
Luc Goutry CD&V ⚙
Mr. Speaker, colleagues, I listen with interest to Mr. Gilkinet. Per ⁇ we are now going too far in each other’s fighting, but in fact the committee meeting went well all day. We have had a conversation, in which, among other things, Ms. Van der Straeten has repeatedly intervened, and even supported certain amendments. I think that our views are not so far apart.
Of course, Mr. Gilkinet, we must be careful when people are against something, and especially if it is one particular group. Doctors are not able to find it, and so on. You must always pay attention to something. It is also because the doctors are a little afraid that in this way we get a little too close to information related to the way they do their work. However, it is necessary for the government to know this. It is also not good that they have complete freedom. They already have a great therapeutic freedom, but at some point we must also have statistics and data to see how health care is performed, what is prescribed for which patients.
If there is some resistance, it comes a little from it. We also knew this with the Cross Point Bank. Everyone was against, but nowadays one can no longer think of the Cross Point Bank.
We each have our own opinions, but I think we should go there; it is a pillar of our health care system. It will become European. If we are at the forefront to do so, we can impose our own quality requirements and other requirements. They will be very high and must be followed by the others.
Georges Gilkinet Ecolo ⚙
Mr. Goutry, I thank you for this constructive intervention, which I largely share. The public authority is there to provoke, from time to time, advances.
In this case, what I regret is that today, on the eve of the vote of the text, all the doctors from Flanders as well as from Wallonia and Brussels, from medical houses as of ABSyM, tell us that they have not been consulted.
Simply, Mr. Mayeur, they have not been sufficiently involved in the approach and in the preparation of this text. I am not talking about the quality of the debates at the level of the Health Committee.
I would have wanted the committee to devote more time to this subject, that the actors have ten days to well prepare their interventions, to analyze the text in depth, but that, especially in advance, within six months, since it is platforms recognized and subsidized by our Regions, they are listened. Indeed, they have a lot of things to explain to us: what they have set up, what they have discovered, the good ideas they have had, the problems they have encountered, in order to look together for the best solutions in this matter.
I regret, Mrs. Minister, that the Wallon Health Network, its Brussels equivalent and its Flemish equivalent, which do the work closest to what will be eHealth, have not been agreed in advance of the text. I attended at the end of the Health Committee a discussion between Mr. Robben and the representatives of this network. and M. Robben himself said that after the no-government period, the work had been continued and that he had no mandate to meet them. The proof, you will meet them this Monday! Meeting the stakeholders concerned after voting the text is problematic!
Ministre Laurette Onkelinx ⚙
This is not true, Mr. Gilkinet! I don’t want to argue, because you want to relay the critics, which I understand very well. I just say that your statements are inaccurate. That is all!
Georges Gilkinet Ecolo ⚙
Who is wrong in this case, Mr. President?
Ministre Laurette Onkelinx ⚙
One of them knows the case.
Georges Gilkinet Ecolo ⚙
I hope you know the case. This is the least of the things, but long before the text is put on the table, I asked you and Mr. Donfut took into account the SMUR data exchange that posed a problem of coordination. I have asked you to meet with the associations concerned. This has not been done! I thought that in a pentaparty government, we would mature this text a little better!
The central question that arises if we want to successfully implement this text is that of the protection of privacy. I note that the ad hoc committee issued a circumstantial opinion which was followed in part by amendments to the text, which is pleasant. Indeed, when a committee constituted for any purpose does its work correctly, I am rather inclined to follow its opinion. I confess to being interlocuted by his final positive opinion, while in neighboring countries and compared to a previous text of the same kind, he was ⁇ critical. But I can only take note of it by saying to myself that there are only fools who do not change their minds!
I was also somewhat surprised by the rather militant attitude of a representative of the Commission because I had the impression that he was defending the text rather than the opinion of the Commission. The fact that the main promoter of the project is himself a member of the Privacy Protection Commission can explain some things!
I was also convinced by one of the arguments of this commission. Before coming to the analysis of the text, I had said to myself that it was interesting to have a specific number for the exchange of health data. This seemed to me to be an obvious means of additional coding. The opinion of the specialists who explained the weight and cost of the system as well as the other issues of encoding the data exchange convinced me. I have received a satisfactory response on this subject.
This debate, however, highlights that all precautions must be taken to protect this medical data as best as possible, can no longer be personal and can no longer be sought, including by some actors acting in a more commercial approach to the healthcare sector.
Mrs. Minister, the answers I have received are more of the black box, of the solemn commitment than of a real commitment, credible and measurable. Not everything needs to be planned, one can, of course, also force the door of an office and steal files on paper. But it is important to find that the security of the system depends more on the petition of principle, the trust delegated to those and those who will manage it than on measurable elements.
We find it ⁇ disturbing that the arrangement provides in its Articles 34 to 37 for the establishment of an ASBL for ⁇ blurred missions and composition. It is simply stated that the ministers concerned will approve its statutes.
That is why we will submit an amendment that provides that the statutes of this association must be approved by a royal decree that will cease to produce its effects if it is not confirmed by a law within twelve months of its entry into force. This is a provision that is already known. Given the sensitivity of the device and the information exchanged and the comments of the State Council and the Privacy Protection Commission, it is important that the Chamber has a capacity to look and control on the composition and functioning of this ASBL which is called to play a central role in this exchange of information.
In conclusion, we will not be able to support this project. It has too many shadow areas, obeyed an unsatisfactory method, and caused low industry adherence. We will not vote against either. Indeed, as I said from the beginning, we share the objectives of this text from a public health perspective and good management of social security. As you have understood, we will abstain, but by expressing the wish either that the majority seize, take a little longer – as permitted by our amendment, under Article 93 of the Rules of Procedure – or that the Senate exercises its right of evocation to further improve this text.
I know you are a pressed and active woman, and so you will definitely tell me that it would be a waste of time for such a great text. In any case, you could take advantage of these weeks to get the best out with the field actors and convince them to support this project. Otherwise, it will be a new sword shot in the water, with a lot of lost time and money. We offer you to lose a few weeks to gain a few years.
Yvan Mayeur PS | SP ⚙
Mr. Speaker, Mrs. Minister, dear colleagues, the bill we are discussing can, in a understandable way, constitute for some something dangerous, obscure, uncontrolled that they will want to challenge, verify, question regularly. For us, it fundamentally represents a major breakthrough in the management of our health care.
While this project has been the target of fears and attacks from some healthcare providers, who did not consider it excessive to sometimes scream at the risk of Big Brother, the organization of in-depth hearings of a wide panel of future people affected by the eHealth platform has helped to remove many ambiguities, answer the multiple questions and convince the real and many opportunities offered by this initiative.
To those who have not attended all the work of the Public Health Commission, I would like to clarify two points that I find fundamental. First, the draft authors and other parliamentarians heard all the comments made by the Privacy Protection Commission and responded to them with amendments – coming by a majority. Together, we worked to correct the text in the way desired by the Privacy Protection Commission.
Second, the representatives of patients, those who defend their interests, unanimously and unambiguously supported this project in which they see a tool to improve the quality of the care provided. This is what public health and policy we are conducting serve, and we need to be more attentive to that. The objective is of course the improvement of the quality of care, continuity and quality of services.
The exchange of information on a patient’s current situation and medical past between a general practitioner and a specialist may be facilitated. Through the participation on this platform of all the healthcare providers who follow a patient, if the patient so wishes and signs his consent, the information concerning him can be quickly localized, exchanged and even if it is scattered across the country. This exchange of information will contribute to a greater safety of the patient because the treatment to be given to him will be given with full knowledge of his history, his sensitivities, his difficulties with certain products or certain therapeutics.
The patient will also see his therapeutic choice enhanced because the procedure allowing him to request another medical advice will be simplified; he will no longer encounter obstacles to obtain his complete medical record from his treating doctor, which will allow to consult, if desired, another provider of care without the slightest difficulty.
The extra-wall routes will also be facilitated, once again to the benefit of the patient who will be able, for example after having undergone a major operation in Liège, Brussels or Antwerp, to follow his post-operative treatment in an institution closer to his domicile without the cross and banner for new care providers to know all the medical data related to this operation and post-care.
Administrative simplification coupled with maximum data security are the main words of this project. Electronic referral of patients between healthcare providers or healthcare establishments will be facilitated; this should allow for time available in the head of the providers and in the interest of patients. The security of the system through end-to-end data encryption or through exchange authorizations that will be obtained from the Sectorial Committee on Social Security and Health is such that the platform offers a security gain compared to existing practices.
The abuses that some believe to detect in computer data exchange actually exist today and are far more serious when it comes to transmissions of "paper" files. Where electronic transmission has already been established, in many places, it has proven not only its high reliability and safety for the patient but also the traceability of the perpetrator of a possible breach or abuse, which is not allowed by "paper" files.
This is much more reliable and safe for the patient. There is no retrograde view of this project.
I would also like to recall the remarks of the professor of the University of Louvain. In his speech, he warned MEPs of the emergence of local initiatives in the field of telematics, which reinvent the wheel and additionally recreate new software in the hope of marketing them later, but without the guarantee of satisfactory security both in terms of privacy protection and in terms of patient rights. The intervention of this expert seems to me fundamental to judge the well-foundedness of this law. His remarks were confirmed by the Privacy Protection Commission, according to which “local initiatives are numerous and collaborate without a overall plan. Some do not meet the minimum standards of privacy protection. A sanitation of the sector is necessary.” This is a significant support for the bill submitted by the Minister.
Therefore, by proposing a strictly regulated quality solution and explicitly responding to the law on the protection of privacy, to the law on the rights of the patient, and finally to the legal and regulatory provisions relating to the exercise of the art of healing, it is to be envisaged that any inclination to DIY will be cut off and that any fear of this project will be calmed.
It is important to note that this platform does not centrally store personal health data. Therefore, it will not present any risk of loss and massive dissemination of such data. Also, the fear of the establishment of a “Big Brother” system is, at least, unreasonable – especially since a similar experience has been applied in our country for a long time. This is, as Mr. Goutry, of the Social Security Cross-Banque, which some feared too. Nowadays no one is afraid of seeing this information come into the hands of his neighbor, his banker, or his employer. I think everyone is satisfied with this system.
Those who ultimately fear the absorption, the dismantling of the exchange networks established at the local or regional level go wrong or express this feeling for other reasons, which we do not have to relay here. I think of commercial development.
These networks by complying with the standards and rules as mentioned above will obviously always be useful. The platform only offers, but it is important, the possibility of coordination between initiatives now scattered across the country.
Moreover, the project that is being discussed is only the skeleton of what it can become. Care providers, through the management committee and the sectoral committee, the ASBL to be created, will have to structure and promote the possibilities of exchange and application that the platform can offer. The discussions and discussions between stakeholders are just beginning. And that is the main thing.
When a sufficient number of actors have joined this project, the next step will, in my opinion, be to gather much larger epidemiological data. We will be able to analyze it and have, with regard to the health of the population, a much more useful analytical approach for everyone. I said it in the committee and I am glad that you relayed it!
I also said in the committee that the hospital medical computer industry is very expensive. It is also the subject of very large commercial practices. Inspired by what we have done for health products, imagining tomorrow, thanks to eHealth, a market form of kiwi-type computing also seems to me to be able to improve the management of our health system and reduce its costs. I hope that through this project, we will one day be able to ⁇ this too.
Finally, we will have the opportunity to evaluate in Parliament what has been done with this tool aimed at facilitating relations between doctors. The success of this project will ultimately depend only on care providers whose, I am convinced, optional but indispensable participation will be large in the coming months. As parliamentarians, we must call for common sense, participation and motivation of all in this project. We need to be there to help the actors work in the interests of patients. This law is another way to contribute to this.
Dear colleagues, I thank you.
Tinne Van der Straeten Groen ⚙
Mr. Speaker, dear colleagues, I share the opinion of almost all previous speakers; this is a very important draft.
It must be of my heart, Mrs. Minister, that the method for me leaves a slightly worn feeling. It has already been sufficiently outlined here and I fear that this design has also become a bit the victim of the fact that there has been no government for a long time and at the time that there was a government, it has actually ruled little and then at the last moment, if the recess actually looms around the corner or the black hole of 15 July comes, a number of things must happen soon.
A lot has been said about doctors. Collega Detiège gave a very detailed report, but in the meantime during the other interventions I also looked again in the report and saw that a number of representatives of the doctors, but for example also of the Cancer Registry, yet pointed out the few consultations that have been there; it was very limited and at a very late moment.
The eHealth platform is ⁇ in the benefit and in the interest of the patient and ⁇ also in the interest and in the benefit of the health care actors. Mr. Goutry spoke about the importance of government in the function of policy support. Mr. Mayeur also referred to this. This aspect is still unclear to me and I do not yet have a vision of how this could go. We also discussed this in the hearings. I think it was Dr. Van den Bosch who said that the eHealth platform can contribute to policy support, to be used as a service to be able to anonymize some data or data. I have no problem with that, because it is then offered as a service. However, we all know that it is not intended to start a database, that there is no central data tracking. Therefore, it is not the same instrument as Cancer Registration.
In this sense, in terms of policy support, we will have to wait a little while until the instrument comes into effect, to see how we can use it for that purpose. What exactly is possible, honestly, is not yet fully clear to me at this time.
The fact that such design comes out, independent of the course of things and the speed that has been there, is ultimately also logical. Today we live in a highly digital society and it is also evident that, as far as the design is concerned, we cannot be left behind in this regard.
Today there have already been a lot of private initiatives or local initiatives taken by doctors or others. We have also seen those people. In that sense, the importance of this draft is very great, since a opinion was given on this subject by the Commission for the Protection of Privacy and a number of things were examined in this draft. This draft imposed a number of conditions that were not imposed on existing initiatives.
In that sense, I also had a bit of a problem with the representative of BVAS who told us that he hoped not to be obliged to work with a state instrument if there are already a lot of initiatives in the meantime. I would not prefer that the doctors in this country would work with this instrument because we know with this instrument that a number of things have been covered.
Is everything OK? I fear it. The previous speakers have said little about the fact that in this draft for a number of aspects a very extensive delegation is given to the King. Many of the implementing provisions for a number of essential matters are left to the King. This does not have to be a problem in itself, but then the law must be clear enough. It must be clear to the King what the law is about and what the principles of the law are. I am convinced that a number of amendments, for example on personal data, have ⁇ clarified the law.
However, I think there are still some unclear aspects. For example, I think of the fact that actors in healthcare are not defined. The Minister has said that it does not make sense to define this. We need to look at the definitions. The tension between what the actors are and the definitions is, in my opinion, not really very clear. There is a grey zone in which the royal decrees may constitute an ambiguity. I wonder if the draft we will vote on is clear enough to respond to that extensive delegation. Are we not giving too much carte blanche? Are we not going too far to the King? As Parliament, we have less control.
I sincerely hope, Mrs. Minister, that you will take the time for the implementing decisions and not work in the same way as this was pursued by Parliament. I hope you will take the time to coordinate adequately with the stakeholders involved, in order to create an atmosphere of confidence. The system will eventually stand or fall with the determination whether or not it will be used. I think it is effectively intended that it can be used a lot because its use will automatically provide for a repair in the existing initiatives. The latter is a comment from the Privacy Commission. These existing initiatives do not cover a number of privacy issues.
To conclude, I would like to point out another important aspect that came into the law thanks to an amendment by the colleagues of the majority. I am talking about Article 36 which stipulates that two years after the entry into force, the ministers will report on the operation of the law. I would like to ask for your commitment to do this in a good way. I ⁇ ’t want this to be another suspensive provision in a law to silence the people’s representatives, who sometimes have some critical comments.
I refer, for example, to the Foreign Affairs Act, which has been substantially amended. There was also an evaluation in the law after a year. We are a year later, we are going into parliamentary recess and we still have not heard any commitment from the minister to evaluate that law.
I would not like to see that this law has suffered the same fate. Therefore, I would like to ask that this law is implemented on that point, that we get a report here. I do not think that the article should be adjusted, but I would still like to ask that that assessment be understood sufficiently broadly. The article now says: “The report is based on the evaluation report of the eHealth platform itself and an evaluation report from the Health Department of the Sectorial Committee.”
However, I would like to ask the eHealth Platform and the Sectoral Committee that when they prepare a report, they also proceed to a consultation of the users of the platform, of the doctors and others, such that when we get a report presented here, we also have a vision of the different users, of the different actors related to the functioning of this platform.
Mrs. Minister, if you would still answer point by point, as you said later, I would still like to have a commitment regarding the implementation of Article 36.
Maya Detiège Vooruit ⚙
I would like to suggest something more positive than the previous speakers. In the past, purple has co-founded the frame of the eHealth platform, for a number of reasons. Today, I suppose, the bill will be approved in the plenary session. This is a historic moment.
Why was this important in the past and today? The purpose of the eHealth platform is fourfold. I will literally quote it here.
First, there is the optimization of the quality and continuity of the health care provision.
Second, there is the optimization of patient safety. I say that because during the hearing it was also said that when it comes to security, a correct legal framework is needed that currently little or no exists in the current systems.
Third, there is the administrative simplification for all healthcare actors. and Hoera! A number of people, such as my colleague De Block and myself, still come into practice daily or even weekly. This administrative burden is enormous. We really hope that progress will be made. You need to think about the certificates. There are constant problems when it comes to administration.
Therefore, administrative simplification for all actors in healthcare, also in the benefit of the patient.
Finally, support the health care policy. eHealth will be able to provide encrypted and anonymised information so that sound studies can be conducted.
I will give some concrete examples, showing that it is good for the patient. The birth of a child can be registered electronically. Doctors who evaluate disabled people will be able to automatically enter this. It will be very easy for the patient to verify what he is right to. For example, it will be possible to verify whether the counter of his maximum invoice has been reached, whether he is eligible for certain additional benefits and whether he is registered in a care course. Pharmacists will be able to check whether their patient has the consent of their counseling physician for the refund of a particular medication. This will have a financial impact on patients. I have already said this in the committee.
Doctors will be able to deliver prescriptions electronically to pharmacists.
You hear that all these are benefits for both patients, healthcare providers, healthcare institutions. For all these reasons I find it very regrettable that some people – I think of the people of Ecolo, of MR and the statements of Mr Moens, of the Order of Physicians, mostly from the side of the doctors – are very suspicious of this proposal.
First, there are advantages in every aspect. Secondly, we should not miss the boat in Europe. Currently, 12 countries are registered to make the project international. Belgium cannot be left behind.
I was terribly shocked by the judgment of Mr. Moens. He said during the hearing: “The perception of the design is undisputed that eHealth will exclusively serve to facilitate government and mutualities life and increase their control capabilities.”
Yolande Avontroodt Open Vld ⚙
The hearing took place before the amendment. You quote Mr. Moens from a text that has not yet been amended. I do not think that is entirely correct.
Maya Detiège Vooruit ⚙
No problem, I have known my colleague for years. I also said during the hearing that I have heard nothing but criticism from the BVAS when it comes to control in health care. I have said that if the government is able to do sound studies, doctors should not have a problem with it. Why Why ? Every doctor must perform his profession well in this country. I am therefore very sorry that people like Mr. Moens make such statements, last year, two years ago, and continue to do so.
Koen Bultinck VB ⚙
Mr. Speaker, I ask you to speak because what colleague Detiège says is quite hallucinating. Ms. Detiège also knows the medical sector from her profession as a pharmacist.
Mrs. Detiège, if you now argue that there could be no problem in these, then I think that is about it, frankly. I can very well understand, although I myself am not a doctor – on the contrary – that doctors consider that we should be very careful with the electronic transmission of medical records and medical data. This is the logic selve. We can really understand from our group the fear of a kind of big brother, especially if we look at the design as it was presented in the first order.
It was only under the rightful pressure from the Medical Corps that the design was amended very thoroughly, thus addressing the concerns of the Medical Corps. In that sense, I am somewhat surprised at what you just said.
Maya Detiège Vooruit ⚙
Mr. Speaker, it makes sense, when a system is being developed, that a number of rules must be respected, such as privacy or cooperation. This must indeed happen.
However, I have repeatedly heard falls that control is taboo. I have difficulty with that. I do not think that there should be no control in a sector such as the health sector. Control means adjustment, thus optimizing the level, the quality of health care. That is also the point of view why eHealth needs to be approved today.
That is also the signal I want to give to people like the gentlemen Moens and Bacquelaine, to a number of people who have criticized Minister Onkelinx. I mean that. The people who work in healthcare have all had to swear by themselves, saying to respect privacy. The doctors and pharmacists will do the same. Therefore, I ask: go with the time, and support the present draft.
I would like to add another point, on a completely different topic. Last Monday I heard people from the field. I found that they have rightly asked, in the case of digitalization, to take care of still keeping a paper version. I found that a very good signal, because it is correct. I do this myself in practice. Everything happens with the computer, and that should be, but yet we also keep the documentation up to date in the paper version. It is about things that we need.
I would say, this is a historical moment.
Martine De Maght LDD ⚙
Today, the use of information and communication technologies can bring about a cost-reducing and quality-enhancing revolution in healthcare. This is a historical moment. A well-functioning informed system for healthcare data is ⁇ desirable. The present draft law is very important but does not sufficiently take into account the confidentiality of personal health data and supervises the eHealth platform too dependent on existing structures, institutions and individuals. List Dedecker will therefore be withheld. I illuminate this for a moment.
In a society where everything is digitized as much as possible, eHealth is definitely desirable, otherwise necessary. In the Belgian health care system, it is full of paper certificates, regulations and certificates. RIZIV figures show that the health funds for the administrative settlement of the health insurance in 2007 received just under 900 million euros. We are not against the informatization of healthcare. After all, thanks to the advances of computer science, the mountain of paper can be managed much more efficiently than it is today.
The benefits of mutual electronic services and information exchange between all healthcare actors are both strategic, economic and social. Why Strategic? Aging and the increasing international mobility of patients are just two factors that make the demand for health care in Belgium in the near future will increase even further. In order to secure and further improve the favourable position of the Belgian healthcare in international rankings, it is of course desirable to take the lead with the resolute choice for informatization only from strategic considerations.
and economic. By implementing an eHealth platform, more and better care can be provided at lower costs, of course on the condition that a cost-efficient personnel policy is also implemented, ⁇ given the growth standards for healthcare spending have been steadily exceeded in recent decades. Any form of budget control is welcome.
The social aspect of the eHealth platform. In terms of medical data, it makes healthcare more affordable, precisely because it should be a cost-saving tool. Based on eHealth, healthcare should be made more accessible for the socially weak. Quality health care should be guaranteed.
What is the lack of the present draft law? Despite the desirability of an electronic platform for the exchange of medical data, the present bill is short on important points. In particular, insufficient safeguards are built into the protection of privacy and the eHealth concept in this bill is too dependent on certain institutions, structures and individuals.
The draft law as it presents is too vague. More accurate descriptions are absolutely necessary to define and protect the electronic flow of medical data.
With regard to privacy, the bill states that the patient’s consent is necessary to process his personal medical data through the eHealth platform within the framework of the legal protection of privacy. A doctor may not transfer personal data to third parties without informed consent of the patient. This concept of informed consent should be better clarified and better defined in the present draft law.
Any consultation of personal data should require a right of access that determines not only what the profession is but also what the capacity of the consultant is. Also in the traceability of access to medical data should be provided and controllable by the patient himself who should be able at any time to change or even withdraw the rights of access.
There should also be sanctions for unlawful access. It is important to be aware that in the absence of guarantees regarding the delimitation of electronic flows of medical data, both patients and doctors will not be inclined to circulate sensitive health information through the eHealth platform.
As for the interconnection of certain institutions, structures, and individuals, the bill risks creating a Big Brother effect in medicine. After all, the daily management of the eHealth platform is concentrated in the hands of one person, the general administrator of the Social Security Crosspoint Bank.
That same man, Mr. Frank Robben, is also a member of the Privacy Commission and general director of the private company Smals. This raises a lot of questions in me. How can it be that a man will simultaneously be a contractor, contractor, consultant, administrator and supervisor of the eHealth platform and a member of the supervisory body?
eHealth is situated entirely in the public sector. Hospital funds and the government have access to the database of medical data. This does not apply to doctors, with the exception of the doctors of the health funds. In conjunction with the concentration of power I was talking about, the danger of a totalitarian regime is clearly around the corner within this sector.
eHealth was removed from the law several provisions to be able to seriously reflect on the initiative. Nevertheless, the majority wants to hunt the platform soon before the parliamentary crossing through this hemisphere. I advise to be careful with a project of such size. As rightly stated, this is a historic moment. Let it be a very thoughtful historical moment.
In addition to the medical associations of telematics networks, for example, representatives of patient organisations should also be heard.
List Dedecker advocates that the e-Health project, which is crucial for the population and patients, should not be approved in a hurry because it is in conflict with democracy. We therefore advocate a thoughtful policy. That is why we will also abstain.
Jean-Marc Nollet Ecolo ⚙
Mr. Speaker, you remember that I requested that Mrs. Gerkens be included in the list of speakers following Mr. Gerkens’ displaced remarks. A major in terms of how she presides over the committee. I have never heard any criticism from anyone in this regard. Only the M. Mayeur allowed himself this kind of criticism. I think it is logical that Ms. Gerkens can answer this, but I do not want to prevent the work from continuing. We have found a way for her to intervene on this subject when she returns.
It will be present later in the evening and therefore will intervene at the time of the justification of the vote. I repeat, we cannot leave unanswered the insinuations of mr. by Major.
Ministre Laurette Onkelinx ⚙
It is true that the report already contains many answers to the questions raised at this tribune. However, from respect for the important work of the parliamentarians on this matter, from respect also for all the organizations that have issued criticism and deserve to obtain a response, I would like to give some explanatory elements.
First of all, I wanted absolute transparency in this text. Remember that this text was in a law of various provisions; as soon as a request for greater transparency, greater debate was issued, I myself proposed to withdraw it in order to organize a real debate in the Health Committee.
Thus, we listened to many actors, all those who wanted to be heard; questions were asked to them and sparked a real debate about the usefulness of such a project as well as the opportunities it will offer to healthcare providers and patients.
I also recall that, following the hearings and the debate, many amendments have been accepted, which come to bring clarifications and raise concerns. I will remind you of a few: the free provision of the basic services of the platform to all users; the encryption of end-to-end data, thus from the shipment to the receipt of the message; the modification of the rules relating to the trusted third party: only public bodies will be able to use I'eHealth. Or any new data flow is conditional on the creation of the Health Chamber of the Sectorial Committee of Social Security, which means clearly that there will be no new project without this committee; the doctors of the management committee are appointed by the representatives of the medical body to the insurance committee; the eHealth government commissioners are no longer automatically those of the Bank-Carrefour; the user committee will be chaired by a doctor; or finally, the law will be evaluated after two years. I will return to this, Mrs. Van der Straeten.
Yes, Mr. Gilkinet, there were hearings, there was a real debate and there were amendments. This is the parliamentary work that must be done and that was done on the occasion of eHealth.
There was criticism of the consultations. Has it been sufficiently consulted? You can always answer yes or no. There could have been a lot of consultation. We are always at the disposal of the interested parties. Explanations were given whenever this was requested. A consultation has even taken place within the INAMI instances where both are represented (Médicomut, the Insurance Committee, the vision group). More individual consultations were also held. In commission, in response to some criticism, I gave dates and almost places in order to convince you of my good faith in the matter.
Consultations will still need to be held to regain confidence; this is what I will do in the framework of the implementation decisions.
I read the press release of the organizations. And I have raised a few major criticisms that I would like to return to.
It has been said, for example, that patient consent is not regulated by law and that no one can see who consults the data.
I would like to make clarifications on this subject because I believe – I don’t think it’s a question of bad will; it’s a complex technical dossier that has undergone many modifications – that there is some confusion between the old draft and the one that was presented to Parliament.
I remind you that the consent of the patient should not be settled in this law because the latter does not deviate in any way from the law on the protection of privacy and that it already regulates the issue of the storage of data within a medical record.
In this regard, I would also like to recall what some brilliant law defenders have expressed on this tribune. eHealth does not manage individual databases. The platform simply serves to interconnect them. This is an important point and I am convinced that some of those and those who issue criticism have not yet incorporated this element.
Medical organizations say the bill changes the rules regarding consent, data communication, and traceability of consultation. I would like to reassure them once again and tell them that the draft does not contain any provision on consultation and transfer that alters the existing situation, itself already largely regulated by the Privacy Protection Act.
Clearly, the current situation in this area, which no one else seems to question, continues to prevail. Neither more nor less!
Traceability of file consultations is ensured by creating a directory of references for each patient. This directory clearly indicates who has accessed and what data. It is accessible not only to the treating physicians but also to patients.
Some almost give the impression that by this bill, the medical records of the Belgians will be presented by eHealth as the stands of a supermarket. Of course, this is not the case!
I would like to remind that only duly authenticated, duly authorised persons have access to the network, that the network is secured by a “log in” system, that access to the network gives no access to medical data if they are not communicated by the doctor or the institution that holds them in compliance with the rules of medical secrecy, with data protection during therapeutic exchanges and that finally the data transiting through the platform will be encrypted, contrary to what currently exists with simple emails.
Also from this point of view, eHealth does not derogate in any way from existing rules on consultation. On the other hand, eHealth will offer new confidentiality guarantees compared to “paper” files – explained in the commission – which move from one service to another without a real confidentiality can be guaranteed, compared to existing individual electronic files – a multitude of services exist today, from the most sophisticated to the most basic – compared also to the transfer of information through simple emails. We do not realize that at the moment, we are far from counting on this matter.
It should also be clarified that any data flow must be subject to an agreement of the Sectorial Committee, i.e. either a principle authorisation for data of a specific character, or a specific authorisation for data encoded and made anonymous for study purposes.
I also heard as a critic that technical standards will be unique. No to No! Furthermore, it is not the law that regulates this issue, but the consultations between the platform and existing networks. Nothing in the current development of the platform provides for the establishment of unique standards and there is no intention in this sense that I would have at any time formulated.
I also heard that social security and health data normally have to be subject to specific treatment and that the project confuses them. No, of course ! Health data remain localized at the providers or in healthcare institutions. The platform does not store them and does not constitute any directory of individual data. The claim is unfounded, it is not because the identifier is the same, in this case the national registration number, that the data are the same. The national registration number is already used, you know, for a whole range of applications, including the civil status, and these applications are perfectly waterproof. The same goes for here. In fact, the project goes even much further in terms of sealing. Banque-Carrefour crosses a series of civil status data for social security institutions, it is exactly the opposite that is organized in eHealth, since the non-storage of data prevents any cross.
We talked about the personality of Mr. Robben, speaking of Big Brother. He was the one who knew everything, he was the one who would do everything. I wanted to answer with the negative, of course, in the committee. And fortunately! We even smiled together about the situation that would happen if he had a car accident. I hope for him that will not happen. But if that happens, there will be a number of experts who will be able to continue the work. When eHealth exists, there will be a CEO who obviously will not be Mr. by Robben. The latter may sit in the Privacy Protection Commission but not in the sectoral health and social security committees.
As regards the medical body in the management bodies, there are twenty-one members with a deliberative voice in the management committee organized on a parity basis between healthcare providers, mutual funds and the State. Among them, there are seven representatives of the insurance organizations, among which there will be - I am convinced of this - a few doctors, there are seven representatives of the providers, of which at least three doctors but this number can go up to five, there are seven representatives of the administrations, among which there will be doctors. There is also, with a consultative voice, a member of the Order of Doctors and a member of the Order of Pharmacists.
My conclusion in this regard is that it is very likely that a majority of doctors will have a deliberative voice in the committee.
As for the delegation to the King, Mrs. Van der Straeten asked me if it was not too large. In fact, the text does not intend to delegate very little. The royal decrees primarily concern the composition of the organs. Only slightly more delicate royal decrees need to be confirmed by parliament. These include the digitalization of documents on paper.
Mr. Speaker, I repeat, my colleagues, this project is first and foremost a very good opportunity for the health sector to benefit from new technologies in optimal safety conditions. Previously, I talked about “patient” personal data. For collective data, think for example of the Cancer Registry Foundation. I have often been asked about the interest of increasing and expanding his work from data collected from all sides. At present, it is thanks to eHealth that it can do this.
The eHealth platform is an extraordinary future tool for collective health that will simplify the lives of healthcare providers. But above all, it is a new tool for patient protection and quality of care. I understand the fears. It’s normal that such a novelty causes fears, but the game is worth the candle and I’m convinced that confidence in applications will come as soon as one and the other perfectly understand the new tool at their disposal.
To answer the direct questions that have been asked to me, I undertake not only to consult on the applications but also to return within two years, as you invited me to do, to make a serious evaluation of the system, which – I hope – will by then convince all healthcare providers.