Opinion | Don’t let the medical industry have our medical data
Doctors working as general practitioners (GPs) and the government are in full agreement about the purpose of the new health care reform. Both sides believe in a focus on development in the primary health sector in areas such as quality, consistency in patient care, medical coverage, modernisation and treatment of people suffering from chronic illnesses.
Nevertheless, a collapse of our health service is approaching by the day. A few articles in the bill prevent the GPs’ representatives from coming to agreement with the government. GPs want equal rights to negotiate their collective bargaining agreement and they want protection of doctor-patient confidentiality to prevent the abuse of data.
The right to negotiate our collective bargaining agreement is a basic principle and necessary if the government wants doctors to continue functioning as independent business owners. Alternatively, parliament can choose to nationalise general medical practices, but that has not been addressed in the current negotiations.
Control or helpful tool
Regarding doctor-patient confidentiality, the GPs’ greatest source of contention is the application of patient data.
The government is seeking to improve treatment for people suffering from chronic illnesses, and it wants better control over the quality of consultations. In order to achieve these goals, they want to compile data from the GP. In brief, data gathering refers to registering various quantitative values related to chronic illnesses by following a fixed template.
This kind of data compiling can be used to follow the development of a patient’s illness and it is hoped that this will prove to be a helpful tool in creating an overview of the condition. Whether gathering data can be applied to improve patient care is currently being examined by – since there’s no guarantee that this is the case.
Regional and council health authorities consider the data to offer quality in inspection standards of care for the chronically ill and at the same time they believe it will ensure the quality of the consultations themselves. It is doubtful whether they fully understand the effects of gathering data and whether they will achieve the intended control and improvement of patient care for the chronically ill.
When standard procedure falls short
To clarify some problems, I would like to tell the story of a patient of mine by the name Kaj, who is representative for a lot of my chronically ill patients. I have known him for seven years. He is 58 and has chronic bronchitis – smoker’s lungs. If I were to conform to registering data for a standard treatment, Kaj would be required to come in twice a year for sessions during which his lung function would be measured, the distance walked before becoming winded would be registered, he would be weighed, he would be lectured about quitting smoking, he would be told to exercise, and his medicine would have to be regulated, depending on the progression of his illness.
In the course of the seven years we have been acquainted, I have succeeded twice in luring Kaj to consultations to measure his lung function. When I ask him, he says: “I don’t want to, Trine, I know what the result will be.”
So Kaj doesn’t come to consultations regularly. He comes in when he has problems breathing. I know exactly which medication would help him, but it costs over 4,000 kroner a year – an amount not suited to Kaj’s budget.
He has trouble coping with a full smoking cessation course, and he has asked me to stop badgering him about it. When Kaj shows up at my clinic, the consultations are on his terms. He receives care and support and I respect him without being condescending or sanctimonious. Together, we build up a connection that in the long-run opens up the possibility that he will make lifestyle changes.
In my opinion Kaj has been treated with a lot of respect and a high quality of care, but that will not be evident in the data examined by the regional health authorities. According to them, this situation shows a doctor failing to register the quantitative data, and even a doctor paying no attention to the suitable medication for the patient.
And there are a lot of patients like Kaj. Far from everyone wants to, or even can, enter a collaborative relationship with their doctors. The facts of the matter are that the benefits of data registration are for the few, namely the rich and healthy. The patients who are healthy and reaching their goals are happy to come in, whereas people who aren’t as well off are prone to stay away. But exactly those patients are inclined to experience complications, which make a visit to the hospital necessary. Those are the people who become expensive for the country in the long run and those are the people who need to be addressed.
Britain’s bad experience
The regional health authorities want to be able to track the patient data to a doctor with the intention of sanctioning those doctors (fining, withholding compensation or the like) not living up to general medical standards, or if patients do not reach their goals.
So doctors and patients need to demonstrate that treatment is being carried out to the best of their ability and prove that the patient is remaining healthy. In Kaj’s case, it would be counter-productive if the doctor was to force him to be treated – or, alternatively, to punish the doctor financially.
This reward system is implemented in Great Britain where the true dynamics of the system reveal themselves. The day following implementation of the system, the whole country’s blood pressure dropped to the mean level – simply because the doctors registered the requested values instead of the actual values. On top of everything, the doctors – excited about the opportunity for a bonus – prescribed a substantially greater amount of medicine for their patients in order to live up to the general standards, becoming a substitution for the cheaper, more appropriate, and long-term changes that can be made in lifestyle.
The compilation of data completely loses its value, and the medicinal fees blow up – without resulting in a viable health care system.
There goes the medicinal industry’s function
Another crucial problem presents itself in gathering data. During the years of sending my patient data on to the GP research unit, it was completed in the name of science – without the informed consent of the patient. I considered it to serve a greater scientific purpose, and I do not feel that I have violated the confidentiality of my patients. In any other situation, it is customary that patients give their consent when a third party is involved. As otherwise the basic principle of what happens between patient and doctor, stays between patient and doctor, unless anything else is agreed upon, gets violated
Moreover, data gathering would have an enormous commercial value. The regional health authorities want to compile the information in a national database. From here, the data could be sold on to, for instance, medicinal companies.
If a company is planning on launching a new medicinal product for diabetes on the market, this company can examine people previously associated with similar products and the outcomes on the values recorded by doctors. The Danes are the most extensively registered people in the world, so the benefits of gaining access to this information are of significance.
But Kaj is unaware that he is in a big focus group and he is not being paid for his contributions. When I explained to him the consequences of gathering the data, he became upset. Kaj feels a sense of ownership over his data. Is he entitled to this, or do the regional health authorities consider it a duty for him to hand over his information? A discussion is necessary about the ownership of data and where the line should be drawn.
The intentions of GPs and the government are to provide a better service for the chronically ill. Therefore it is paramount that we meet as soon as possible and discuss how to solve this problem together. This is extremely urgent as the government has given GPs a very short time to respond. June 27 is the last chance before the second reading of the law. There is substantial risk that the law currently being discussed turns out to be counter-productive in concern to public health control, data gathering and care for the chronically ill. Dialogue is necessary for reaching an agreement. Do we really want to further escalate the conflict before we actually sit down with one another and discuss matter through?
Trine Jeppesen is a general practitioner.