Proposition 54K3685

Proposition de résolution relative à l'utilisation des mégadonnées dans le secteur de la santé.

General information ¶

Author

N-VA Yoleen Van Camp

Submission date

March 21, 2019

Official page

Visit

Status

Adopted

Requirement

Simple

Subjects

protection of privacy database data protection health policy medical data resolution of parliament personal data exchange of information public health

Voting ¶

Voted to adopt

Groen CD&V Vooruit Ecolo LE PS | SP DéFI Open Vld MR PVDA | PTB

Abstained from voting

∉ N-VA PP VB

Party dissidents ¶

• Peter Luykx (CD&V) abstained from voting.

Contact form ¶

Do you have a question or request regarding this proposition? Select the most appropriate option for your request and I will get back to you shortly.

Discussion ¶

March 28, 2019 | Plenary session (Chamber of representatives)

Full source

I refer to the written report.

However, I would like to intervene on this proposal.

I know that. You have the word.

Mr. Speaker, I would like to give a further clarification to the dossier, because the topic was agendaed at the request of our group in the committee. Indeed, we have found in the Committee on Public Health that there are many problems and especially gaps in the registration of health care data.

For example, look at how many patients pay extra and the data on honorary supplements. We know from some data and especially from third parties that the charged supplements in Wallonia are twice as high as those in Flanders, but the government does not keep these data. I find it strange that we do not know how much our patients have to pay extra.

For example, the numbers of obesity are six years behind. The latest health survey dates from 2013. We still rely on these figures today because we are unable to keep data, which, however, is very meticulously kept in patient records by our healthcare providers, decently centrally in a register. How many people are overweight and obese? We do not know. How many people have diabetes? How many people have epilepsy? We do not know.

We also do not know much about the use of care. I have written two resolutions on improving care for people with diabetes and epilepsy because we don’t have that data. We do not know today how many people have epilepsy, because we do not keep diagnostic data recorded. We do not know what care people receive today and whether they are adequate. We do not know which care which added value for which patients provide.

We only have spending figures. If I ask you how many people with epilepsy there are, I get the answer that one will check how many anti-epileptic drugs were spent. This, by the way, is also wet fingerwork, because that medication also has other uses such as migraine. One divides that by the number of DDDs and then one makes a large estimate of the number of patients. So we do not know that.

The same goes for obesity. I brought it back to the press last week. We know that there is a big problem of overweight. Fortunately, bariatrics are available to many people, but we do not know what effects are associated with it. Do patients lose them sustainably? According to recent scientific literature, one in four people recover after the procedure. Is this the case for our patients? Are they well helped by bariatrics or should there be supportive measures for dietary and psychological support? We do not know all of that today.

Our policy is largely wet fingerwork, which is hallucinating, as the public health budget amounts to around 30 billion euros.

That is why we have been on the agenda of the Advisory Committee on Scientific and Technological Issues. We asked to look at how this data can be better recorded.

We have referred to Guidland Sweden. The different Scandinavian countries do it a bit better. They keep anonymous aggregated data of their entire population and can thus capture demographic trends, guide their policies and monitor their spending much better. This, of course, also has a lot to do, as we know from our work visit, with the fact that those countries are organized decentrally. The provinces can not only collect the income there, but they can also spend it fully. For us, in this monkey country, this is, of course, a total utopia. We have nine different levels of competence. But that completely aside.

Measurement is knowing. Therefore, I wrote a resolution that was to guide us a little bit towards the Scandinavian guides. It is a pity that it has become what is now, the outstanding proposal that is presented today. But well, we are all going in the right direction.

It’s better than making promises and not fulfilling them, as happened when you said you were going to start pilot projects for recording data. I think you talked about the data on lung carcinoma. Until today, so many years later, I have still seen nothing of it. Per ⁇ the resolution today can give you a push in the right direction to still work on that registration.

I hope it in any case. If we had data, we could know how those 30 billion euros, for which the Flaming has to work hardest to contribute to our social security, are exactly going and where it leads. We could lead our policy much better.

Mr. Speaker, first of all, I would like to thank the members of the Opinion Committee on Scientific and Technological Issues as well as all the employees who have actively contributed to the drafting of this proposal for a resolution on the use of big data in the health sector. As was the case during the work that led to the resolution on autonomous vehicles in 2016, our committee worked in a constructive and consensual mindset.

I also thank the many experts we have received during the ten organized hearing sessions, which translate the in-depth work done on the use of big data in the health sector, a topic as complex as interesting and sensitive. Experts have enabled us to identify the issues related to the development and use of this data.

As chairman of this Advisory Committee, I am ⁇ pleased and proud to bring this resolution proposal before you in the plenary session, primarily because it was unanimously approved by the political groups present in the committee (this has also been the committee’s brand for the entire legislature), but also because it symbolizes a collective awareness of the importance for us, as legislators, to insert ourselves in the reality of a changing world, by striving to better understand and better anticipate the technological innovations that shake our society today.

Digitalization leads to an increase in the number of data generated, and the healthcare sector does not escape. The importance of their protection, conservation and analysis takes considerable proportions. Currently, there is no common management or even systematically standardized management of data collection and retention in the health sector. As a result, the data value chain is very quickly broken, and the potential of big data is not exploited.

These big data, however, constitute an extremely rich mine that has many advantages. They can enhance the effectiveness of diagnostics and therapies, more accurately predict the onset of certain conditions or develop a more personalized approach to health care. They also enable better detection of fraud in the healthcare sector.

Thus, big data and data export can significantly improve our health policy and the allocation of public resources. The challenges induced by the exponential growth of big data are many, starting with the risk of systematic medical surveillance or the infringement of medical secrecy or therapeutic freedom.

It is also crucial to be able to ensure the balance in which each individual, regardless of their risk profile, can access health care and must be protected against any risk of misuse of their health data.

While the labels placed by the recent GDPR allow us to be reassured, we also strongly advocate for a real climate of confidence to establish around this new issue in health care, in order to make its effectiveness as high as possible. This confidence must result from a high level of transparency and impartial control.

Today, it would be illusory to think that it is possible to retreat in the face of the growth of data and its use. The role of the legislator is rather to move forward, while setting the best possible framework for this evolution of society and how to manage health care. The sharing of health data must be expanded for the benefit of continuity and improvement of care. The European legislative framework must serve as a guide, in particular through its provisions providing for the free movement of data, clear and proactive information to data subjects, increased responsibilities of each data processor and strengthened control and sanctions.

With this proposal for a resolution, we ask the Federal Government:

- to build with all stakeholders involved in the healthcare sector a vision to support health policy with regard to big data and data mining;

- to map, in collaboration with the Communities and Regions, existing databases and exchanges between them;

- to ensure that hospitals and doctors can always maintain complete freedom in terms of therapy;

ensure that patients can always freely consent to the use of their health data outside of the exceptions provided by the GDPR;

optimize the availability of health data for scientific research purposes;

- to inform the House of Representatives annually through a progress report;

- to contribute to the development of a climate of confidence among health actors involved in data processing processes;

- to support IT projects for the management of health data, sharing and processing of such data from cooperatives of healthcare providers or other non-commercial initiatives and to avoid the creation of monopolies in these areas.

Thro ⁇ this legislature, we have worked on complex issues, with all the seriousness that is necessary, in a state of constructive and consensual spirit. The Opinion Committee on Scientific and Technological Issues is a great tool. I express my wish that it can be strengthened and modernized in the next legislature because in the face of the technological complexity that will continue to grow, the legislator needs such support to effectively guide him in his legislative choices and to help him exercise real control.

I would like to thank you for listening and for the confidence you will continue to give to this resolution proposal.