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Conversation with Alexander Kasapchuk, creator of the "Reasonable Consumer's Guide to Medical Services" about what concerns each of us - about solving medical problems and personal responsibility for our health.
The Smart Consumer's Guide to Health Care is a completely new format: it is not an encyclopedic description of medical problems, but a presentation of possible solutions. The authors of the project completely abandoned standard template descriptions and adapted each material for its specifics. The purpose of these materials is to show the patient all the services that he can use to solve his problem and help him become competent in solving it. As if he came to a supermarket where all the solutions are on the shelves, and under each of the decisions there is a detailed description of its consequences: what exactly will change in his life, for the better or for the worse, if he uses this product / service or refuses from them. This is especially important for severe and chronic diseases.
We talked with Alexander Kasapchuk, one of the founders of the project, and asked him several questions on topics that excite even the layman who is far from medicine.
Is there a problem of lack of medical knowledge?
When I started as a resident in the Stroke and Injury Care Unit, I saw that they were not getting the care they needed. Many of them were partially or completely paralyzed. Patients were sometimes offered questionable treatments and, due to lack of information, agreed.
I remember one case: there was a man in the department who was diagnosed with a very severe progressive disease of the nervous system, and everyone knew that in a few years he would become a seriously ill person, and maybe even die. We had to prepare a report on the topic of his case. To do this, it was necessary to persuade him to do another tomography of the brain in order to show new images at the presentation of a clinical case. It was a completely useless procedure for the patient. In the end, he did it, spent the money, but got no benefit - and this is not an isolated case.
Therefore, I realized that the main problem of patients is that they are very poorly informed about their condition in general, about their diagnosis in particular, about the methods and possibilities of diagnosis and treatment, and so on. They cannot say a firm yes or a firm no to a medical proposal. This is not normal and it shouldn't be. This is harmful to both patients and doctors.
How to use the information correctly?
We always insist that people turn to specialists for help and strengthen relationships with their doctors. The biggest problem is not that people go to doctors less often, but that they do not use the right information before going to the doctor. They come for an appointment, and in 20 minutes the doctor must conduct an examination, and collect an anamnesis, and draw up a treatment plan, and fill out the documentation, and people do not even know what questions can and should be asked and how to relate to what the doctor suggests.
Is psychosomatics true or fiction?
This term is not found in professional literature, so I cannot talk about psychosomatics as such and I do not understand well what it means. Medicine has already stepped on this rake many times, when health problems were explained by either evil spirits, the evil eye, or hysteria, or stress. And then it turned out that it was a microbe or a disturbed molecular mechanism that was to blame. Explaining a condition by a psychological disorder can lead to the fact that the disease will remain unexplored for a long time, and treatment is unavailable.
It is also worth understanding how limited the knowledge of medicine in many areas is. Many problems, for example, headache, or joint and muscle pain, autoimmune diseases remain poorly understood. The influence on these conditions of factors such as nutrition, micronutrient intake, and so on remains unclear. Therefore, before attributing everything to a psychological disorder, it is worth seriously studying the symptoms that bother a person and find out what official science knows about this.
Why are gynecologists so fond of prescribing contraceptives?
It may seem that medicine has a specific optimal solution for each specific problem, but this is very far from reality. It is not surprising that medicine offers patients what it already has. And it is not surprising that these drugs do not help many patients.
Sometimes it happens that the same pathophysiological disturbances cause a whole range of different symptoms. For example, women with polycystic ovary syndrome may experience irregular periods, excess body hair, and acne at the same time. While all of these symptoms may be associated with the same condition, and therefore amenable to the same remedy, they are often treated separately as gynecological, endocrinological, and dermatological problems.
On the other hand, different gynecological conditions can show the same symptoms. For example, irregular bleeding can occur in women with polycystic ovary syndrome, in women with fibroids, in women with adenomyosis, in women near menopause, and in girls in the first years after the onset of menstruation.
Combined contraceptives (COCs) are symptomatic. This means that they can be offered to all these women, since in fact they are worried about the same symptom.
In addition, there are almost no drugs with a different mechanism of action that could produce the same effects as combined contraceptives, and would have the same high safety profile. Because of this, in many cases, the choice falls quite rightly on the COC.
It should be added that women should hardly take any recommendations as strict prescriptions. I am fully convinced that, in many areas, the information available already allows women to quickly develop the competencies they need to participate meaningfully in medical decision-making.
The use of combined contraceptives is one area that patient readers can perfectly figure out on their own.
What can you say about the phenomenon of HIV dissidence?
On this issue I have almost nothing to say. I hardly follow pseudoscience. Since it is impossible to keep up with everything, I chose to serve those people who already understand the value and limitations of the scientific approach.
I believe that the information is already sufficient for the initial overcoming of medical illiteracy and pseudoscientific manipulations in the spirit of the myth that "HIV does not cause AIDS." However, there is very little information for those who want to really understand the problem and make informed medical decisions. I help these very people, although I sadly admit that people who are in a state of delusion also need help.
To be afraid of cancer or not to be afraid
The most important thing to know is that there are no simple and short straightforward answers to questions about cancer. And if you really want to figure it out, you need to be prepared to read 250-400 pages. We have published materials on the site, on which we have been working for about six months. It was not possible to compress this information to a smaller volume, and we did not want to mislead the readers. I am convinced that those who read these materials will have a very clear picture and will find answers to most of the questions regarding protection against cancer.
Is euthanasia ethical or not?
I do not have a formed opinion on this, but we will definitely study this issue in detail when we develop materials for families of patients in critical conditions. Although the issue of euthanasia concerns patients in terminal conditions, this issue allows us all to better understand what our expectations from medicine should be in solving any problems. Often we cannot demand from medicine a complete recovery or complete elimination of suffering, but we do not want to undergo treatment or examinations if this cannot be of benefit to us; we want medicine to equally care not only about the duration of our life, but also about its quality; Finally, we want medical decisions to be based not only on scientific rationale, but also on our human preferences and values.
The Smart Consumer's Guide to Health Care is a completely new format: it is not an encyclopedic description of medical problems, but a presentation of possible solutions. The authors of the project completely abandoned standard template descriptions and adapted each material for its specifics. The purpose of these materials is to show the patient all the services that he can use to solve his problem and help him become competent in solving it. As if he came to a supermarket where all the solutions are on the shelves, and under each of the decisions there is a detailed description of its consequences: what exactly will change in his life, for the better or for the worse, if he uses this product / service or refuses from them. This is especially important for severe and chronic diseases.
We talked with Alexander Kasapchuk, one of the founders of the project, and asked him several questions on topics that excite even the layman who is far from medicine.
Is there a problem of lack of medical knowledge?
When I started as a resident in the Stroke and Injury Care Unit, I saw that they were not getting the care they needed. Many of them were partially or completely paralyzed. Patients were sometimes offered questionable treatments and, due to lack of information, agreed.
I remember one case: there was a man in the department who was diagnosed with a very severe progressive disease of the nervous system, and everyone knew that in a few years he would become a seriously ill person, and maybe even die. We had to prepare a report on the topic of his case. To do this, it was necessary to persuade him to do another tomography of the brain in order to show new images at the presentation of a clinical case. It was a completely useless procedure for the patient. In the end, he did it, spent the money, but got no benefit - and this is not an isolated case.
Therefore, I realized that the main problem of patients is that they are very poorly informed about their condition in general, about their diagnosis in particular, about the methods and possibilities of diagnosis and treatment, and so on. They cannot say a firm yes or a firm no to a medical proposal. This is not normal and it shouldn't be. This is harmful to both patients and doctors.
How to use the information correctly?
We always insist that people turn to specialists for help and strengthen relationships with their doctors. The biggest problem is not that people go to doctors less often, but that they do not use the right information before going to the doctor. They come for an appointment, and in 20 minutes the doctor must conduct an examination, and collect an anamnesis, and draw up a treatment plan, and fill out the documentation, and people do not even know what questions can and should be asked and how to relate to what the doctor suggests.
Is psychosomatics true or fiction?
This term is not found in professional literature, so I cannot talk about psychosomatics as such and I do not understand well what it means. Medicine has already stepped on this rake many times, when health problems were explained by either evil spirits, the evil eye, or hysteria, or stress. And then it turned out that it was a microbe or a disturbed molecular mechanism that was to blame. Explaining a condition by a psychological disorder can lead to the fact that the disease will remain unexplored for a long time, and treatment is unavailable.
It is also worth understanding how limited the knowledge of medicine in many areas is. Many problems, for example, headache, or joint and muscle pain, autoimmune diseases remain poorly understood. The influence on these conditions of factors such as nutrition, micronutrient intake, and so on remains unclear. Therefore, before attributing everything to a psychological disorder, it is worth seriously studying the symptoms that bother a person and find out what official science knows about this.
Why are gynecologists so fond of prescribing contraceptives?
It may seem that medicine has a specific optimal solution for each specific problem, but this is very far from reality. It is not surprising that medicine offers patients what it already has. And it is not surprising that these drugs do not help many patients.
Sometimes it happens that the same pathophysiological disturbances cause a whole range of different symptoms. For example, women with polycystic ovary syndrome may experience irregular periods, excess body hair, and acne at the same time. While all of these symptoms may be associated with the same condition, and therefore amenable to the same remedy, they are often treated separately as gynecological, endocrinological, and dermatological problems.
On the other hand, different gynecological conditions can show the same symptoms. For example, irregular bleeding can occur in women with polycystic ovary syndrome, in women with fibroids, in women with adenomyosis, in women near menopause, and in girls in the first years after the onset of menstruation.
Combined contraceptives (COCs) are symptomatic. This means that they can be offered to all these women, since in fact they are worried about the same symptom.
In addition, there are almost no drugs with a different mechanism of action that could produce the same effects as combined contraceptives, and would have the same high safety profile. Because of this, in many cases, the choice falls quite rightly on the COC.
It should be added that women should hardly take any recommendations as strict prescriptions. I am fully convinced that, in many areas, the information available already allows women to quickly develop the competencies they need to participate meaningfully in medical decision-making.
The use of combined contraceptives is one area that patient readers can perfectly figure out on their own.
What can you say about the phenomenon of HIV dissidence?
On this issue I have almost nothing to say. I hardly follow pseudoscience. Since it is impossible to keep up with everything, I chose to serve those people who already understand the value and limitations of the scientific approach.
I believe that the information is already sufficient for the initial overcoming of medical illiteracy and pseudoscientific manipulations in the spirit of the myth that "HIV does not cause AIDS." However, there is very little information for those who want to really understand the problem and make informed medical decisions. I help these very people, although I sadly admit that people who are in a state of delusion also need help.
To be afraid of cancer or not to be afraid
The most important thing to know is that there are no simple and short straightforward answers to questions about cancer. And if you really want to figure it out, you need to be prepared to read 250-400 pages. We have published materials on the site, on which we have been working for about six months. It was not possible to compress this information to a smaller volume, and we did not want to mislead the readers. I am convinced that those who read these materials will have a very clear picture and will find answers to most of the questions regarding protection against cancer.
Is euthanasia ethical or not?
I do not have a formed opinion on this, but we will definitely study this issue in detail when we develop materials for families of patients in critical conditions. Although the issue of euthanasia concerns patients in terminal conditions, this issue allows us all to better understand what our expectations from medicine should be in solving any problems. Often we cannot demand from medicine a complete recovery or complete elimination of suffering, but we do not want to undergo treatment or examinations if this cannot be of benefit to us; we want medicine to equally care not only about the duration of our life, but also about its quality; Finally, we want medical decisions to be based not only on scientific rationale, but also on our human preferences and values.