1. Why the safety should be placed central in genesis in the entire legislation.
Report European day of the Rights of the Patient by debaters 18april 2009
Translation of raw notes 18 April EU day of the patient rights. (Version Siegfried van Hoek)
Present: Discussion members, and Public
1 Chairman discussion members Rob Oudkerk abbreviation of name R.O.
Introduction
The national day for the European wrights for the patients was held on initiative of Zorgbelang,
together other organizations. Typical was that all in all there was one healthcare provider only
present under the public, next to healthcare consumers and interested ones about the topic, and
no representative of VVS. In the care relation a care-triangle can be pointed out: 1 st the care
providers, 2 nd the insurer and 3rd the consumer, by which the question arises if the consumer
still is having enough influence in the healthcare provision. The patient should be the first party
in stead of the 3rd , because the demand for healthcare starts with the client as principal.
Likewise the client should be placed centrally within the healthcare treatment, but the doctor
also only has ten minutes for each patient to perform the offered healthcare as good as possible.
The quality of the healthcare offered has to change. Of the healthcare consumers is 40% of the
opinion that this is not so good, while 80% of the healthcare providers is sharing the opinion
that the quality absolutely can be improved! There should be instruments to make sure that also
something can be/is done with that legislation against it. The debate was limited to three
themes: The right for privacy in medical information, the right for a good tuning in of the
health care, the right for compensation in case of a complaint. The members of debate could
expose their interest and to give a filling in how the rights for the patients are guaranteed.
Themes
We state the guard of privacy? There is anxiety about the guard of privacy with the coming of
the new law Electronic Patient Registration/Dossier EPR/D. Everything is based upon trust.
There has to come a legislation that will settles this vast, in order to be able to arrange matters
correctly up to the Higher Court.
In practice there has to come a better tuning inn, because doctors do not communicate that
well? Who is carrying the (final) responsibility herein?
The right for compensation exists, but herein the most important is the recognition that
mistakes can (have) happen(ed) unesteemed the question of culpability. Why is it such
problem, before damage is recognized? Acknowledge that mistakes in healthcare can happen,
and that mistake s are recognized by health-carers. Nobody can diminish this: I m sorry, I
should not have done that . Short termed contracts with insurers could help. 17% of the Dutch
mail is not washing their hands often, we do not need to implement a legislation against this in
the healthcare, the person should be addressed regarding in practice. Thus there is a problem
with the report of Wrong . Error happened means Error made means Wrongly done. The right
for compensation should not lead to a culture of claim, but as a client one has to prove that a
treating physician has made a mistake...
Conclusion de bate leader:
The client actually is the 1 st party: principal. Because healthcare provision starts with the
demand for, but is not holding this position. Listening to the patient should be place on the first
place. The society is made by people, and not (unesteemed) the legislation.
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2. 2 Annemiek Gorris MBA Ass Healtmanagement Forum HMF
This legislation has to come, because it will give more mainstay to the patient, whether being
on the 1 st 2nd or 3 rd place. Things go wrong once and a while, the quality could be much better.
That is why the question arises what the legislation should contain in order to describe limits,
for they offer the guarantee to approachable claim. The hospital as a autonomic deciding
institute does not exist anymore. The medical specialists define their methods of acting.
Hard labor is needed to improve the quality.
How to deal with apologizes, the information that becomes demanded to see inn, the requests
for second opinion and recovery treatment? It all certainly can be better. Blamable damage
should be compensated. But one needs a system for that, wherein is clear where to claim for.
I do not know if this legislation will arrive in future, I do hope that there are reasons to install
the legislation as such as.
9 Drs. Gita Gallé NVZ Ned. Ver. Ziekenhuizen. NVZ
In the education more value (reasonably and empathy) should be made of carefulness in the
transference of medical information, and the transcription of healthcare appointments.
A legislation does not contribute anything to that wish, but the question is if tuning inn,
coordination and communication could be better arranged a bit in protocols. Within the hospital
there are several developments going with a discrimination between care paths and clinical
care. In providing responsible care the client also should know who is the addressable person
for him/her. That development is going already within the culture of the hospital and that is
important. But it has not been defined clearly yet. The legislation is not giving enough
content/clarity about care paths and clinical paths. Who will be responsible herein finally?
The EPD can offer already some improvement in the tuning in of the healthcare providers
within the healthcare chain. The complexity increases. What are the processes most risk full?
The reportage of errors therefore is already useful. But one has to know a lot in order to
analyze an error.
The settlement around medical injury of harm is not well arranged, it is a missed chance to
settle something within the guidance of damage, unesteemed of the question of guilt. The
settlement of blamable medical injury of harm has to be arranged well. Patients and consumer
organizations together with SER etc are negotiating about the terms for delivery of this. There
are registered settlements here about. We have to settle sharply how to deal with complaints.
The policy has to be clear here about. As a client one has to prove that the healthcare provider
has made a mistake. We could ask why in the new legislation proposal the treatment of medical
injury of harm has not been (sufficient) settled. In France there is a fund for medical injury of
harm for injuries without blame, a blamable case then means a juridical case. The tax office
showed even to claim fist at the door of the victim for her share in the payment of a financial
compensation, even before the actual payment of the compensation for medical injury of harm
was done in fact.
Openness and mutual adressment regarding is of importance herein, but even more important is
the transparency is increasing. Now for instance a reportage is made about with hidden
camera s.
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3. 5 Ir. Titia Lekkerkerk NPCF Ned. Patient.Cons.Forum NPCF
At the moment still medical report notes are going up and down between. (Information should
be questionable in steps.) The health-carer here carries the authority, but the file is also
property of the client. Maybe this should be translated into the equal mutual right to decide
which parts can be for what level of healthcare visible. The health-carer in the provision of
healthcare are working with the medical file, but with the permission of the client. People feel
haunted with a psychiatric history for instance, and risk not to be token seriously.
The patient also has a free choice, but important is that the client receives one central point to
address to, because how many times a clients has to tell their complete story... The healthcare is
becoming more complex with more then one healthcare provider active at the same time. We
do want to clarify points of attention, but legislation will not add in this anything...
I m not becoming that misj (happy) of it. Of course there are also things going well in the
healthcare provision. In the exchange one also has to start to use the information about
what/where the healthcare provision is going alright.
3 Mr. Wiro Gruissen CZ insurer healthcare innovatie CZ
Next to medical information of professional quality, there is also the information of experience
from healthcare consumers. The fear for violation of privacy is real, but it should be trusted to
the system. It has become the moment to show confidence. The patients (need to) know what
are their rights. To couple information a client has to give permission before, for giving
information visible for third parties.
The organization of healthcare is a task the healthcare insurer could fulfill.
The Insurer of the care provider also has a duty (of care) when a mistake has been made.
The insurer could address himself to a healthcare provider in case of circumstances. Selection
of healthcare providers by the insurer is possible by putting demands to a care institution to
have matters in order. Maybe within a term of five years? Approachability upon circumstances
within the healthcare provision is possible, but the reality of situation is not set for. Exactly
those initiatives of individuals is appealing to the insurer. People that have the strength to do
something, but that is a process of 4/5/6/ year in becoming strong in position.
4 Drs. Pieter Vos Raad Volksgezondheid RVZ
Privacy is not the main problem, so why such a discussion regarding the EPD? The quality of
the healthcare is the most important topic. The privacy regarding medical information isn t
absolute anyhow because of contagious diseases. Such a legislation limits the unlimited
demands of for instance a mortgager and also describes the possibility to deal responsibly with
a medical file. It is a negative opinion to think that working professionally and responsible that
exchange of medical information is taking place backstairs. From the clients 67% do want to
see their information privacy protected.
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4. The system of healthcare is complex and governmental institutes don t understand this.
Attention is remains needed, to guarantee the free right in options of choice. Tuning in is
needed in the healthcare with fixed guidelines.
There has to come a legislated standard in ways to settle medical injury of harm.
Independent investigation should have been done after for the damage to be compensated.
We never tire of talking about it, but the patient should be the first party. A straight path /
legislation in healthcare will not arrive that quickly: 16 ½ million people, in the politic domain
the topic is difficult, but there has to come a rightful position of the client within the healthcare.
6 Mr. Paul Rijken KNMG Kon. Ned. Med. Geneesk.Ver. KNMG
For the protection of privacy we do not need a new legislation, that legislation is already there:
law persons registration, protection of personal information. The health-carer has a duty to
keep up a decent file. Who is actually owning this Medical File? Who is allowed to do What
with a file. The -r. The patient only has the right to ask a copy. The EPD is to enforce the
quality of healthcare providers, privacy is a variable term, information cannot be left out of a
file that easily, whereupon healthcare providers have to perform their provision of health care
to the patient. There is an objection/problem in/with requests for erasing of medical
information, because the danger can appear that a health-carer in the extreme consequence is
lacking essential information and will arrive in a wrong track (interpretation) for treating a
client. There will not arise a new legislation for. Legislation is a symbol. A new law could even
weaken the position of the client. Actualize the current legislation at the developments within
healthcare is possible, but the legislation is sufficient. Put trust on the privacy in the healthcare
relation with the EPD.
The tuning inn within the healthcare chain indeed can be improved. The healthcare is becoming
more complex with more then one acting doctor on a client. We do want to clarify points of
attention needed for, but legislation will not add more in this. The person in question where the
client should address to with all questions, is the healthcare coordinator, and who is keeping
regie and sight upon al processes of healthcare offered. As first point of addressment it is also
their duty to arrange this well. Good mutual tuning inn is needed for good health care
provision, wherein the client should be token serious, but that is also depending on the client.
But this legislation does not settle the communication between regular and alternative
physicians, the regular doctors do not have a list of alternative doctors available. This could
only work if the alternative doctor also has a regular doctors diploma. But the wrights seen
from that perspective remain equal for the consumer unesteemed visiting a regular doctor or
not. That legislation according the responsibility will not arise, but in case one central point for
addressment can be pointed out, then lacking in the healthcare offered can be cached up.
Provide to the client the right to address him/herself for saying inn in the decisions.
In case a client has a complaint regarding a medical treatment, then the right exists to make a
complaint according to the rights of the group of profession. The professional association carry
together mutually the responsibility of amicable evaluation within the group of profession.
Liability claims to another person is an individual right. Compensation is the most important
right adjudged to a client. The patient is told an error had been made. Short termed contracts
can be applied by insurers to the care providers (in theory), this is happening already once a
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5. while. The healthcare insurance demands for duty in healthcare, a mistake made also happened
under that duty. We are responsible for the healthcare provided.
There should be installed a code of behavior with a Counsel for Medical Injury of Harm, with
an open culture where medical files are to be seen inn, where upon with an advocate of medical
injury of harm can open a case. But for this the liability insurance of medical profession should
cooperate as well. The tragedy is to be shorted inn around procedures of medical injury of harm
by keeping the procedure short. WE do our best, but we cannot do this alone, also the liability
insurer has a part in this, they have to cooperate here for.
We are optimistic regarding the developments, and we want to work at what is not going well.
We also want to present twelve measures regarding the provision of professional care. The
client needs a position of rights. Do look above all to what is going well too.
7 Mr. John Beer Letselschade advocaat BEER ADV
In any situation their is the demand to request permission of the patient to be allowed to look
into a file containing medical information! There is an interest for the patient to a certain
screening before and/or by the client selves! We are dealing with the enforcement of the
juridical position of the patient. The ministry WVS however do want a legislated tuning inn
about central coordination in the healthcare chain.
The situation is different then the government would like to see in its construction of
legislation. How many times a client has to tell the complete story over and over again etc...
Will everybody keep on working solitary in spite of the proposed measures? Patients have to
have/keep the possibility to choose their healthcare provider, and regular treating doctors are
impairing the options of choice. BIG (registry of allopathic doctors) affect the possibility of
choice (in the demand for tuning in of the chain of health care).
Organizations of patients should form a collective system about providers of healthcare and
their experiences with in the transition of the old system to the new one. There is a problem
with the information given with healthcare being offered by allopathic healthcare providers and
alternative providers. There are more disciplinary cases under regular doctors then alternatives.
How can the communication be improved. A complaint at court for correctional matters can
help in an individual case.
The right for compensation is generally anchored in our Civil legislation book (not restricted to
the health care). Patients have the right for a compensation, with a wide juridical field for a
compensation, to make up (be compensated) what has been lost by (reproachable) acts
performed by others. Compensation of damage is compensation of loss by guilt. In this
recognition of damage there is also the comparing between age and medical injury of harm.
What in the case you can not work (anymore), that is lots of damage when you are still Young.
We do not have American affairs, but also in the Netherlands we do have a problem in the
settlement of medical injury of harm. In case of a dispute between a client and a doctor a short
cause could be started against the hospital, because actual reports regarding a medical treatment
exists, but they are kept closed, they are not to see inn that easy...
The doctor is your friend, except if you are having a dispute with him, then he is your foe. How
can you prove that an error has been made? How can you prove a mistake has been made.
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6. There is a difference between criminal activities in the silence (concealment) of medical injury
of harm and the juridical being blamable for a mistake. People want to know what has
happened: What has happened doctor ?
And they want to prevent that a mistake can occur again. To be able to prevent an error can
happen again, in the first place, is the most important for claims of damage. The hospital is the
central responsible in liability... I agree with Mr. Rijken, but the judge also carries out its own
opinion regarding the content of a case in the administer of justice. The legislation makes it
mandatory to offer descent health care. This debate deals with the enforcement of the wrights
of the client after all.
The client should be the 1st party but holding the 3 rd.: with as 1st the healthcare professional,
and as 2nd the insurances/government. Your law as you are searching for will not arises that
quickly, there are to many objections for the moment. Beer advocaten is set motivated to
improve situations, but doesn t see that much change. Beer advocaten is taking pessimistic the
attempts to improve the rights for patients. Fortuitous Dimitri appeared strong enough to fight.
10 Public
Privacy is according to the government an existing real problem (the screening of personal
medical information in searching a job for instance). There certainly are certain social
consequences for an individual (on the micro-level). (Example: in labor reintegration projects
for instance, where a questionable way medical information can be handled (on micro-scale).
Main parts of the EPD therefore should be covered. The client needs certain wrights in the
disposal of medical information. Necessary information needed regarding current pathologies
and medical situations of treatment should be mentioned with. But is it necessary a non
psychiatric care provider is going to be informed with information regarding a late psychiatric
case in medical history? The responsible person in complaints about a file of an (ex-)
psychiatric patient and the visibility for others is the care provider. How can a department
protect and control the extend of visibility in a more and more private sector? The visibillity of
who has seen what in the EPD is important for the interest of the client. But will all clients
also control / guard this?
People that have underwent a psychiatric treatment in the past are carrying around a kind of
social stigma, they can even be aggrieved by social welfare departments, but they also can be
harmed extra (deliberately) in the case of medical injury of harm.
There has to come a change in the structure on European level. In case someone loses its right
leg while it should have amputated its left leg, then the results in treatment are visibly. But who
is carrying the blame? A complete regiment of doctors was involved, and they are all hiding
after each others back, not in favor of the harmed /aggrieved patient. Therefore the blame
should be put at the desk of the hospital, they will have to deal with that question internally.
The clients in fact is not supported. But is more or less clear that something went wrong, and in
emotional sense cutting of the wrong leg does have far going consequences, but in emotionally
cutting off the wrong leg brings far going consequences. The person needed to help a client
could be a functionary of complaint, where the complaint should be posed intermediary.
Doctors refuse flatly to recognize errors to the victims. There is a difference between
something went wrong and something was done wrong.
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7. Additional aspects like financial compensation also could be invested in a separate funding for
provisions / social facilities. In case of financial compensation the Tax Office is quickly there
to request their 50% , sometimes even before payment to the client has be done in fact.
Clients are set back / aggrieved structurally in their rights. The question arises if doctors (in
silence) form a criminal organization meant to harm the clients in their rights in the case
medical injury of harm appeared (cult of silence with fraud etc. Included Etc.) It is a shame, in
practice in fact nothing is done at all for victims of medical injury of harm!
The EPD could give interesting findings regarding the reportage of medical injury of harm.
Research by the foundation de Ombudsman Hilversum showed out, that 75% of the medical
injury of harm files appeared to be incomplete on crucial points for being able to point out the
cause of medical injury of harm. (Will the EPD also be filled with false information?) In my
experience even proving a case as a client was remarkable. First one was not able to see case,
then thereafter they mentioned they were not able to stand by in such a severe case ( easily
proved and all )! The minister of Justice does not want (for the time being) to set improper
medical activities punishable. And the KNMG is stating, that there are no new laws coming in
legislation. What is the use of a new legislation if that one isn t respected anyhow? But Mr.
Rijken of the KNMG however carries the opinion that improper violations indeed should be
persecuted!
Public: Patients can be active with an error endlessly, but please be rather positive about the
medical aid offered. (Sweet meant, but what about bad cases...?)
8 Dr. Eric Verkaar Zorgbelang Ver. Zorggebruikers ZORGBELANG
We are talking about the future of the health care and its development direction. The position
pf the client has to be enforced, and the possibilities start with the position of the client in the
purchase of healthcare. The care has to improve to deliver what patients are having their rights
on. In the interest of care the damage also should be investigated, and on the social level there
should be recognition for the client unesteemed the question of guild. Contracts with healthcare
providers could be short termed, in order to exclude dysfunctional providers from installation.
It is not that easy to get a mistake evaluated by another doctor. But damage (lost) has been
suffered, and the damage has to be defined. Social recognition of the suffered damage has to be
there, unesteemed the question of guilt. The settlement for medical injury of harm should be
dealt with central and short termed. With the recognition of damage nothing happens to learn
from with examination: how could this have happened, and (how) can we prevent this in future.
Erik Verkaar (organizer debate) is thanking everybody for visiting this event, with gratitude to
WVS and CZ for the financing of this day. and he expresses his wish that the legislation for the
rights of patients will be an item on the political agenda. The minister has to hear what kind of
opinion patients are carrying (seen from the macro-structure, not the experiences on micro-
scale proving something is systematically wrong.) The manifest is the result of a action of
report at the foundation Zorgbelang organized by them, readjustments might follow still.
The minister did not wanted to receive it personally, that is a pity.
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8. 11 Siegfried van Hoek external comment
In pursuit of developments within Europe finally the Dutch Government will pay attention to
the rights of the healthcare consumer. The foundation Zorgbelang also carries the opinion that
there is lacking some in the legislation proposal of WVS: like the right for a better settlement
of medical injury of harm with an eventual recovery treatment. The foundation Zorgbelang
presented in addition on this debate a Manifest called Mij een Zorg ( Who Cares ) regarding
the rights of the patient (healthcare consumer). The members of debate (however) shared the
opinion that demands of WVS do not match with the healthcare practice in fact. As like as the
here formed macro-image is neglecting serious situations going on in the micro-level? Next to
the large group of healthcare consumers and likewise interested it appeared that only one
healthcare provider in person was present under the public. And there was no real debate with
the public, one was abled to speak out their opinion.
The debate wasn t held about what the most important rights are for healthcare consumers,
as was announced in the brochure, but rather an after talk in conclusion upon the three themes
discussed at the regional debates: the right for privacy, the right for a good tuning inn in the
chain of healthcare provision, and the right for compensation for the healthcare consumer.
These three themes are part of the most important group of rights for the client. The first two
themes (privacy and the tuning in within the chain of healthcare offered) only becomes an
issue when damage arises... In short the key for the debate is laid within the third theme called
the right for compensation or else creating the position for the client in the right for an equal
strength (lawful position) in the liability legislation. In spite of an exciting legislation the
situation in practice is quiet bad for victims of medical injury of harm. The right is still denied
by the ministry of Justice, proving the KNMG note veilig melden ( safe reporting ): improper
violations for the meantime do not have to be persecuted. Everybody agreed that things can be
better, but the issue is that complex that forming a new legislation is not adding something new
in order to deal with. Even more, adaptation and addition in the exciting law is more realistic.
And apparently when it is too difficult to evolve the medical legislation? Then centralise the
legislation around the safety of the patient, inhere blameable handlings can judged better and
more honest for all parties. When a doctor is performing in reconciliation his/her healthcare
task with his/her conscience and in respect with the patients safety, then there is northing to
worry from a judgement about medical handlings, also when the result is unwanted. There is a
difference between things that went wrong and things that were done wrong. In case things
were done wrong, the accusation of blame for arises. But the accusation of blame also can be
divided into an unwanted act and a (badly) meant mis-treatment.The last category should
expect punishment, the first one should expect guidance in how we together can make it better
further. The researches (inspectional) for financial liability and medical cause in effect should
be independent from each other. Take in mind what a clients needs to continue after in society.
There is a need for more integrity in the application of the law, and with less subjectivity
within. Laws do not create society, people are indeed creating that, also in the case of non
observance of the legislation. Legislation is there to describe values and to punish (unwanted)
violation of these values. In order to be able to change in the excising system one should set a
course, when also new legislation in itself cannot improve the situation / or when not respected:
1) Acknowledge society is made together with mutual liability.
2) Integrity is the backbone of the existence of state and legislation, guard this together.
3) Put patient safety central in legislation also in the liability.
4) Judgement of medical injury of harm should be made neutral governmental responsibility.
5) Do research after medical injury of harm, and create a knowledge base serving everybody.
6) Set medical violations punishable, without sanctional tools every law is just a low comedy.
Would these guidelines respected only, then within the real situation an new more honest
situation in the wanted direction of development of legislation could come starting from the
current one. Set the safety in genesis entirely central in legislation.
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