Internet access to patient health records anywhere, anytime

Availability, quality and financial stability

In health care, we talk about availability of care for all, about financial stability of systems and about the quality of the health care. Quality, availability and financial stability were set as the main goals for the development and reform of the health care systems in a European Commission report titled, "Modernising social protection for the development of high-quality, accessible and sustainable health care and long-term care" [PDF, 190kB]. These goals were approved by the European Parliament at the end of April, 2005.

The three interlaced parameters cannot be separated. If we were to concentrate only on quality, the costs would increase and the availability of health care would decrease. Likewise, if we were to concentrate on financial stability, there is the danger of decreasing not only availability but also the quality of the available care.

Quality = qualifications, equipment and informations

In order to have quality health care, it is important to have qualified medical personnel, who provide the medical care, quality of the medical equipment, through which the care is provided, and information, which the distributor of health care has at his disposition when making a decision.

The qualifications of medical personnel are given by their education and experiences. It is necessary to bear in mind that the medical care is not only given by the doctor. The quality of care depends on the quality of the whole team of doctors, medical nurses and other cooperating personnel. Frequently the members of this team are not only medics, but also technicians and other specialists who work with the machines and other complex technology.

The quality of the education of doctors and medical personnel is determined by undergraduate education, gained primarily in universities, postgraduate education ended by attestations and lifelong education. The systems for educating medical personnel are usually guaranteed by the state and are to a certain extent coordinated within the European Union.

The quality of the technical and mechanical equipment in the medical centres is usually guaranteed by the state through the granting of licences on providing health care. The whole arrangement of the norms defined parameters, which the medical centres and their equipment must fulfil. These parameters include hygienic regulations from the area of protection of public health, the technical requirements for equipment, especially the accreditation of laboratories, and a whole other range of norms.

Let us return to information. There exists a whole range of information, some of which are useful, and often necessary, if we really want to provide quality health care. This information can be divided into general and individual. Individual information is related to a specific person.

General information

General information can be briefly characterised as the summation of everything known about humans. It includes all the information from the area of medicine and related sciences. General information is the subject of studies, is contained in books and journals and the access to them is made easier through modern technology, such as the internet. The use of internet as a source of general information is already commonplace not only in providing medical care but also in providing preventive care.

Internet, with its unlimited capacity, immense speed and very good availability is a very good setting for the sharing and exchange of general information regarding health care. The information is of course meant for different users.

Information regarding preventive care is meant for the wide public and is a part of the support for health promotion and health education. On the internet, already today, we find an immensely large amount of information meant for the wide public. This includes information about the healthy life style, about preventing diseases, about diseases and their cures as well as a lot of other information. The volume of this information increases by a geometrical progression and it is very probable that it will continue to grow. Apart from the question as to how to orient in this large amount of information, there is the more important question of judging of the quality of this information. In the European Union, there already exists a report of the European Commission dedicated to the quality of the websites related to health care.

The second group of information related to health and diseases, which cannot be found on the internet is usually meant for the doctors and other medical personnel. This is information from medicine and related subjects. The internet is an ideal setting for the spread of the newest pieces of knowledge from the sciences. To this category belong not only the newest scientific publications and their bulletins but also detailed information about the ongoing or completed studies, about medications and their effects as well as a lot of other information.

Individual information

Individual information is always related to a specific person. The first thing that must be remembered is that individual information is sensitive personal data.

Individual information is acquired by doctors during an inspection. Already in their first years of study of medicine, medics are taught how to acquire information through anamnesis, physical check-up and laboratory inspection and displaying techniques. Another way to gain information is to obtain it from somebody else.

Anamnesis is the acquisition of information from a patient, possibly a different (usually a closely related) person. A part of anamnesis is not only the identification of the patient, but also a description of his or her problems and their development. It also includes previous diseases, previous treatments undertakes and their results. A whole individual chapter of anamnesis is the family anamnesis, in which we find the diseases that occurred in the patient€™s family, the work anamnesis, which describes the working environment of the patient and any possible factors influencing the health, the social anamnesis, which describes the environment in which the patient lives and allergic anamnesis, which includes all the things the patient is allergic to. A correctly recorded anamnesis is an important source of information and is often the most important in deciding the treatment and predicting the outcome. However, we will leave the detailed description to the medical textbooks.

Physical check-up is another important source of information. It is acquired by the doctor in personal contact with the patient. It includes information such as the height, weight, blood pressure and temperature. It also includes information gained through touch, listening and tapping.

As more technology infiltrates into medicine, the volume of information gained through the technology increases. This information includes the results of laboratory tests, such as the tests of blood, urine or other body liquids or tissue. Also in this category are included the results of so called imaging methods, usually X-Ray, ultrasound, tomography of magnetic resonance tests. Another chapter is the information gained through invasive tests. This chapter includes the results of endoscopic and catheterization tests.

A completely specific group of information is the information regarding the results of treatment. This information is created gradually as the treatment occurs. It includes for example information gained during operations or reactions to medicine, the effectives of medicine and any possible negative side effects.

All of this information is extremely important in deciding about the next medical treatment, about the next investigations, medications or treatment regimes.

Sharing of information

It is clear that it is beneficial to share and filter individual medical information. It is not possible, nor correct, to gather all the information every time before a decision. It is therefore necessary that each information, once it comes to existence, is made available for the making of the next decision.

The most common source of information is the patient. The patient gives the doctor information regarding not only his previous medical status, but also laboratory tests that were conducted, operations undertaken and medicine used. However, the patient does not usually remember all the necessary information, does not recognize the importance of the individual information and does not understand all the information and as a result does not give it in an accurate form to the doctor. In some cases, the doctor meets a patient that is capable of giving only few, if any, detailed information. Such patients include young children who are not accompanied by an informed guardian, elderly persons with memory gaps, people who have trouble communicating or mentally handicapped patients.

Another source of information is the written report from a doctor, who provided the previous treatment. This information can contain the anamnesis as well as provided or recommended treatment. However, we often come across patients who do not have a previous recommendation from another doctor and who do not have any report with them. If they do have a report, it does not always contain all the necessary information, but it is of course better than nothing at all. A special case is the patients who bring immense quantities of information with them including detailed reports from previous treatments. This large volume of unsorted information is then a complication as the analysis of the information is very time consuming for the doctor and does not always produce useful information.

The results of laboratory tests, imaging methods or invasive tests are all considered as medical reports in this text.

A medical report can be either in paper or electronic form sent by email. This option is favourable without doubt. The condition, which is not usually fulfilled, is the proper security of sensitive personal data against unauthorized access.

The information systems of medical centres are becoming the main sources of medical information. In these systems, there is the amalgamation of a large quantity of individual medical information and if the next medical treatment is provided at the same centre, then the availability of this data is excellent and the decision regarding the proposed treatment is much more accurate if the information is correctly used.

In the last couple of years, we find the information technology is enabling the sharing of individual medical information between individual information systems. It is in fact a more sophisticated form of sharing information between medical centres and between the providers of the medical care. In the databases can be stored the medical information details of individual patients. Authorized personnel can go into these databases and use this information. It is a very convenient form of sharing the information. Apart from the proper security against unauthorized access, it is important to solve the authorization of the people using the system. The main question is the agreement of the patient to allow a third person, such as another doctor, to access the information. The patient does not always automatically agree for his doctor to have the access to all his medical information. The main problem with this sharing of information is the need to know the medical centre in which the previous medical treatment was provided, respectively the data storage where the information is achieved. If the patient has received care from many medical centres and the patients€™ information is saved in many different data storages, then the finding of the information becomes an unbearably complicated detective.

To whom the information belongs

There is very interesting the topic to whom the individual health information belongs in fact, who is eligible to know them, have access to them and use them. Everybody may think at the first glance that the information belongs to the patient. I agree with it of course, but it is not so simple.

The information is known obviously to the physician (or healthcare worker, healthcare institution) who has identified it - the physician who examined the patient and found the enlarged liver knows indeed that the patient has enlarged liver. I have met an opinion according to which this physician is an exclusive owner of this information as he/she found it. The supporter of this approach has claimed that it is on the decision of the physician whether he/she conveys the information to the patient or even to other phycisians. The information is said to be the result of his/her work and therefore it belongs to him/her. This approach cannot be agreed to. The work of the physician is paid among other things by the patient through insurance or directly and therefore its result cannot belong to the physician.

One of the extreme opinions states that the individual health information should belong to the health insurance company as that company pays for the health care. In opposite, individual health information, that is information about the health and illness condition of the patient, should not be known to the insurance company from the principle.

Another, and this time not a small, opinion stream argues that the individual health information should be accessible to all providers of the health care, to all physicians. Even with this opinion I cannot agree in any account. There are sensitive personal data which have to be protected against unauthorized access, that is even persons who are doctors.

In practice we found often that individual health information which is deposited in the information system of the health care institution is accessible to all doctors of this health care institution, if this health care institution provides health care to this patient.

According to this rule, the doctors of the eye department would be able to learn which female patient of the gynecological clinic is or is not pregnant and how high level of cholesterol belongs to the patients of the internal ambulance department. Even in this case I cannot agree.

The last key in the access to the individual health information is real providing of health care to the patient. In such system of control the access to the information is granted to the doctor who in fact provides the health care to the patient. In such case it is fully justified from the medical point of view for the attending doctor to be able to become familiar with all the information and especially due to the fact that he/she will use it during the decision process regarding the further health care which he/she will provide to the patient. Even in this case we may encounter serious problems. The first one is the way through which within one health care institution, e.g. hospital, to determine, which doctor is or is not the attending physician for each patient. The second one, the more serious problem, is whether indeed the patient consents in every case that each doctor who will provide the health care should have automatically access to all information regarding his/her health condition. We may imagine that the patient meets a doctor to whom he does not have the trust and does not want this doctor to have access to all sensitive information. Doctors do not agree usually with this approach, but from the viewpoint of the patient it is more than understandable. Of course, The patient usually hands over all available information to the attending doctor, nevertheless the patient wants to have the right or the opportunity to decide on this transfer or to block it in some cases.

The information belongs to the patient

We are finally approaching the solution. The information belongs to the patient, and only the patient can decide regarding to whom make it accessible and to whom not. Doctors do not have the right to transfer among themselves sensitive citizens€? personal data which undoubtedly the individual health information is, without their consent.

It remains to resolve the method and the shape in which the patient will information obtain, how it will be memorized (written) and how it will be further transferred to another attending doctors and other persons.

The first and the oldest, yet still used method is the verbal transfer of the information. The doctor conveys the result of the examination to the patient, the patient remembers it and conveys it to another doctor. The method is simple, but understandably the least reliable.

The transfer of a written report is another classical technology. The written report is being sent by mail. When we send the report by mail, either the calssical one or the electronic one, we have to know in advance the addressee of this report - thus we have to know the doctor who will be providing the next care to the patient. Very often it happens that this information is not available and even cannot be available, and in this case the information for the further decision making is not available.

Written report is possible to be sent by the messenger, most likely by the patient himself/herself. If the patient has the report with him/her, it is sure that the information will be available there where the patient is, and it is highly likely in the place where the next care is being provided and where the decision on it is being taken. If the report is being carried by the patient, there is quite high risk of the messenger failure - the patient may forget, lose or destroy the report. Furthermore, the patient-messenger sometimes leaves the report with the next following doctor and thus the option is lost to use the the information during the next decisions.

The health book

The health book is the tool for sharing the individual health information. The health book belongs to the patient who carries it along. The separate doctors make individual health records into the health book. The patient can make himself/herself familiar with the information recorded in the health book and can them show according to his/her decision to further people, especially to further doctors who decide on his/her health care. The patient has all the information with him/her, thus the information is usually available always there where the decision on the next care is taken (usually the decision is taken there where the patient is).

The idea of the health book is not new. For example, it was used in the Czechoslovak Army fo several tens years.

The health book can have various technological design. The classical form is a paper booklet, notebook, into which the doctors write the individual information. Such design has its own limits and demerits. The paper form of the health book has a limited capacity. It may be forgoten, lost, destroyed. The writing is tedious, it means another administrative workload to the doctors. The information stored in the paper health book and not protected against unauthorized access in whatsever way.

Very popular technology is the chip card. This information carrier known mainly from the banking sector has many advantages compared to the paper health book. The information can be more easily written into the chip card by means of the information system used by the doctor as well as be easily read. Information is far better protected againts unauthorized access.

Along the individual health informationthe chip card can carry also other information, for example identification data readable optically and electronically or secured electronic signature. Many disadvantages remain - even the card has a limited capacity, it may be lost or forgotten. Plus the use of chip cards is conditioned by the technical equipment - on top of the common personal computer, each doctor needs to be equipped by the reader and writer of the chip cards.

IZIP system

Project IZIP started in 2000 in the Czech Republic selected a new technology for the health books of the patient. The health books are placed on the Internet. Such health book is not limited as for the volume of the information, it cannot be lost, forgotten or damaged by the patient. The writing and reading from the internet health book is realized through a personal computer connected to the internet, there is no need for any further software equipment nor any hardware equipment such as the card reader. The protection of the sensitive personal data is in this system secured at much higher level than with paper books or with chip cards.

Anotehr advantage of the health books on the Internet is a possibility to write from several places simultaneously without physical presence of the patient. The laboratories can thus write down the individual results in the internet book on-line and practically real-time, whereas with the chip card or the paper book the patient would have to run around the laboratories which is a nonsense of course.

Project IZIP is realized in the Czech Republic since 2002. Every citizen can freely and free of charge request an establishment of the health book on the Internet. Within couple of days the book is established and the citizen obtains exclusive access right to read in this book.

All doctors who have applied again freely and free of charge for the system can write in this book. The doctors however cannot read without the right granted to them by the citizen, the owner of the book.

The health books on the Internet resemble the health records in the doctor documentation. On top of the records from individual examinations they contain laboratory results and results of other examinations, they may contain also the picture records. The component of the health book is also the information on the prescribed medicine and medicine picked up in the drugstores.

The writing and reading of the information in the health books should not cause any further labour to the doctor. Therefore the writing goes through fully automatically by means of the ambulant software used by the doctor. The same way the reading of the information happens from the health book, providing the doctor gets the authorization to read from the patient.

The information in the health book of the patient is accessible through the Internet and the browser of the web pages without any further restrictions from an any computer in the world connected to the Internet. Thanks to this feature is the individual health information of the patient available without any restriction anytime and anywhere.

System IZIP has been used already by 800,000 citizens in October 2005 in the Czech Republic, more than 8,000 doctors have written in their health books about 2 millions of health records. The system is debugged, verified and ready to be expanded into other countries.

Conclusion

The health care needs fundamental change. This change can been deeper focus on the patient, the citizen. The health care is the system of services from professionals to the citizens, the purpose of the health care as a service is to fulfil the expectations of the client, that is the citizen on one side and the society as the whole on the other side.

The decisive role in the health care and its reform cannot play the state, nor the health insurance companies, nor doctors and hospitals. The decisive role must be played by the citizen. The citizen who really gets the actual, not just a formal, right to choose, who will be equipped by sufficient clear and correct information for the decision and who will bear real respomsibility for his/her decisions. The providers of the health care services in such system will be professional advisers to citizens and administrators their responsible decisions. They will be in competition with each other as the competition is the guarrantee of the continuous increase of the quality of the service. The target is nothing else than the quality, availibility and long term financial durability of the health care.