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Collective intelligence applied to healthcare

HOW DOCTORS THINK?

People usually do not think that one day they might get sick. However, the sensitivity of the human body is proportional to its complexity. Normally, the body is in a state of balance, and illness appears suddenly as a disruption in the person’s current lifestyle. When an illness occurs, the patient and family are often not prepared and need not only the expected physical care but also emotional, social, and cognitive support. Understanding the way doctors think means, ultimately, including the patient in the methodology for solving clinical problems. It is a resource to educate patients and families about the sequential steps that doctors have to follow to make precise diagnoses and accurate recommendations. It is never a one-size-fits-all model. Patients and families are invited to express their critical opinions and discuss all information with the attending physicians. Patients are very peculiar, and a comprehensive approach must be followed. The increasing use of shared decision-making in clinical practice requires very well-informed patients supported by a good doctor-patient relationship. Take a look at the tutorial, specially designed to achieve the mentioned goals.

TUTORIAL

History and Physical Exam

• Signs and Symptoms
• Diagnostic Hypothesis
• Exams
• Multidisciplinary Team
• Critical View

Pathology

• Materials
• Gross Examination
• Microscopy
• Immunohistochemistry
• Genetic Markers

Imaging and Endoscopy

• Objective
• Image Tests
• Endoscopic Exams
• Exam Report
• Image Accessibility

Staging

• Disease Extent
• Staging Exams
• Histologic Grade
• Tumor Markers
• Classification

Treatment Plan

• Treatment Intention
• Surgery
• Radiation
• Systemic Treatment
• Clever Drugs

Medicine and Evidence

• Knowledge
• Innovation
• Recommendations
• Evidence Level
• Peer-review

Integrative Model

• Collective Intelligence
• Surgical Skills
• Pathology Skills
• Comorbidities & Consulting
• Attending Physician

Second Opinion

• Why & How?
• Patient’s Benefit
• Physician’s Benefit
• Patient Care Meeting
• When?

Global Vision

• Edge of Knowledge
• International Cooperation
• Compliance
• Requirements
• Experimental Treatments

Emotional Support

• Defense Mechanisms
• Patient Information
• Behavior by Age Group
• Psychiatric Aid
• Clue

Family Dynamics

• Prevention of Family Crises
• Overprotection
• Medical Liability
• Family Role
• Family Demands

Clinical Trials

• Eligibility
• Phase I
• Phase II
• Phase III
• Informed Consent
RETURN

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History and Physical Exam

SIGNS & SYMPTOMS
The section of Medicine that deals with disease signs and symptoms is called semiotics. Signs are objective manifestations, described on physical exam according to predefined criteria. Symptoms are subjective manifestations, usually reported by the patient. Each disease is expressed by a set of signs and symptoms, sequentially or simultaneously, translating its biological behavior. Unfortunately, there are some situations in which the disease is asymptomatic, which justifies the use of routine screening tests.

DIAGNOSTIC HYPOTHESIS
Doctors are trained to propose diagnostic hypotheses. Hypotheses are based on disease symptoms and signs collected from the patient’s history and physical examination. Usually, the most common diseases have predefined patterns of clinical expression, leading to more specific diagnostic hypotheses. Physicians are well trained to recognize these clinical patterns. The creation of hypotheses is an essential step in medical reasoning.

EXAMS
Tests are chosen and interpreted according to the diagnostic hypothesis, allowing its confirmation. All tests, including blood tests, diagnostic imaging, endoscopies, and even pathological examinations, are not 100% accurate. The doctor should validate them, as long as they are in accordance with the disease’s clinical expression pattern. The final diagnosis relies on the physician’s critical view.

MULTIDISCIPLINARY TEAM
Diagnostic accuracy is based on a multi-professional approach. Medical knowledge is too extensive, leading to progressive specialization. Doctors are trained to work together in an interdisciplinary team. The diagnosis is a result of the combined efforts of multiple specialties, including clinicians, surgeons, radiologists, and pathologists, among others.

CRITICAL VIEW
One of the most important characteristics of medical activity is a critical view. Diagnostic accuracy is proportional to the physician’s critical thinking ability. Medicine is not an exact science like mathematics or physics; it is a science with reasoning based on probabilities. The diagnosis is supported by the physician’s ability to integrate collective information provided by multiple professional opinions.

Pathology

MATERIALS
Morphologic diagnosis includes pathologic analysis of surgical specimens. It should describe the structural changes observed in a biopsy sample or in an entire surgical removed organ. Samples are also observed under the microscope, describing changes in cells arrangements. A tissue sample is called biopsy, when only a small fragment has been sent to the laboratory. Most surgeries provide the entire organ for pathologic exam. The pathologic exam is usually described in a written report, which is forwarded to the attending physician. When the material comes from fine needle aspiration, the examination is limited to the identification of cells clusters and the method is called cytopathology.

GROSS EXAMINATION
It is the part of the pathologic examination in which the physician describes changes in the form of the examined material, without using optical devices. Gross examination allows the pathologist to select the most representative areas of the disease, which are sampled and prepared for microscopic exam.

MICROSCOPY
It is the part of the pathologic examination in which samples selected during gross examination are prepared for analysis under a microscope. This preparation preserves the tissue using dehydration followed by embedding with paraffin wax. The specimen forms a block that could be sectioned with a microtome, producing a very thin section that is placed in a microscopy slide. After staining and preparation, the glass slide is examined under the optical microscope. In almost all cases, pathologic diagnosis is clarified by the use of a simple and universal staining technique called hematoxylin-eosin (HE). This technique could be refined using monoclonal antibodies, increasing the diagnostic specificity.

IMMUNOHISTOCHEMISTRY
Consists of an extension of the pathologic examination in which the expression of molecular markers is used to infer the cell biological behavior. The technique is based on binding monoclonal antibodies with specific cellular markers. An example is ki67, which indicates the percentage of cells that are multiplying.

GENETIC MARKERS
Research has advanced a lot in this area, especially in cancer treatment, opening up the opportunity for Personalized Medicine. More recently, it has been described cancer genomic profiles, which provides a better understanding of disease biological behavior. Tumorigenesis could occur as a consequence of increasing numbers of copies of an oncogene, a phenomenon called amplification. Alternatively, a mutation in tumor suppressor gene could elicit a loss in its protection function. In breast cancer, for example, a set of genetic tests (Oncotype 21 and Mamma-Print) allows to infer many aspects of tumor aggressiveness, leading to improvements in treatment guidance. Additionally, mutations in BRCA1 and BRCA2 suppressor genes could make the patient more prone to develop breast cancer at a younger age.

Imaging and Endoscopy

OBJECTIVE
Although the physical examination is an essential step in detecting the disease, there are some situations whose diagnosis can only be assessed using special devices. They include endoscopic methods and imaging techniques. Both are described in this section of this tutorial. Browse them for more information.

IMAGE TESTS
The image diagnostic methods include X-ray, ultrasound (US), computed tomography (CT) and magnetic resonance imaging (MRI). These methods enable the detection of anatomic defects. Some of these methods use contrast media, which are administered intravenously, allowing the enhancement of morphologic abnormalities, further assisting the diagnosis. A nuclear medicine device (scintigraphy) uses radioisotopes, which could detect metabolic changes, observed during disease process. More recently, PET-CT was introduced. The method combines the positron emission scan with computed tomography. PET-CT uses a radioactive contrast medium called 18F-flouro-deoxy-glucose, which is taken up by highly metabolic active cells, increasing their detection. The results are measured in standardized uptake values (SUV), which quantify the cellular proliferation rate. The method is often used for identification of the size, shape and location of tumors, also measuring their metabolic activity.

ENDOSCOPIC EXAMS
They are diagnostic methods that use flexible fiber optic devices, allowing filming and photographing the changes observed in body cavities. Patient sedation supports the exam with less discomfort. In esophagogastroduodenoscopy, the device is introduced through the patient mouth, allowing a view in real time of the esophagus, stomach and duodenum. In colonoscopy, the device is inserted into the rectum and progresses throughout the large intestine. It is an essential exam in the prevention and diagnosis of colon and rectal cancer. Bronchoscopy is a fiber optic device, which examines the respiratory tract and is one of the main methods used to diagnose lung cancer. Cystoscopy allows for the diagnosis of bladder cancer. Using endoscopic exams, the physicians are able to collect samples (biopsies) sending them to the pathology lab.

EXAM REPORT
Endoscopic and imaging exams are important aids for a more accurate diagnosis. They are always accompanied by a written report signed by the doctor who carried out the examination. Generally, the physician selects the most illustrative data in an attempt to better document the findings. Films or photographs are also attached to the written endoscopic report, supporting diagnostic evidence.

MATERIALS’ ACCESSIBILITY
The attending physician is responsible for the definitive diagnosis. It should be based on the patient’s history and physical examination, imaging studies, endoscopy, and pathology reports. The material used for pathological diagnosis, consisting of the paraffin-embedded block and slides, must be stored under the responsibility of the pathology laboratory. However, they belong to the patient and can be requested for further review at any time. Endoscopic visual and imaging materials, when delivered to the patient, must be carefully stored in a safe and organized file, as they represent irreplaceable documents, which may be necessary for future comparative reviews.

STAGING

DISEASE EXTENT
This is a concept specially used in malignant diseases. Cancer is usually diagnosed in the primary tumor. However, spreading of cancer cells is the main characteristic of malignant tumors, which occurs predominantly through blood or lymphatic routes. Cancer could be diagnosed at any time during its natural history. The evaluation of the disease extent is called staging. The stage is based on the primary tumor location and size, which is described by the letter T. The stage also includes lymphatic spreading, designated by the letter N and blood metastatic disease, which is represented by the letter M. The combination of the three descriptors creates a classification called TNM. Based on TNM, each cancer type is further categorized from stage I up to stage IV, indicating progressive disease involvement. For each stage there is a specific treatment recommendation and a higher or lower cure rate.

STAGING EXAMS
Based on the diagnosis, the attending physician decides which tests are necessary to assess the extent of the disease. The exams used for staging include imaging methods such as X-ray, computed tomography (CT) and magnetic resonance imaging (MRI). More recently, PET-CT was included, which assesses both anatomy and metabolic function changes. Eventually, even more invasive methods, such as bone marrow biopsy, are necessary, especially in leukemia and lymphomas. In clinical oncology practice, doctors are very concerned with the precise staging of cancer, selecting the most accurate tests for each specific tumor, based on its biological behavior.

HISTOLOGIC GRADE
This is also an important concept in cancer staging. During tumorigenesis, normal cells are transformed into cancer cells. Tumor cells can be at different stages of differentiation. Undifferentiated cells tend to be more aggressive, expressing a high proliferative index. The differentiated cells resemble the original form. In microscopy, the chance of identifying the original tissue varies according to the degree of cellular differentiation. The tumor must be classified according to its histological grade. Lower grades are associated with a better prognosis. The best example is the Gleason tumor classification used in prostate cancer. A Gleason 4 tumor is less aggressive than a Gleason 8 tumor. In some tumors, the histological grade has already been incorporated into the TNM classification by adding the G descriptor. You can better understand the prognostic importance of the G descriptor by evaluating staging for soft tissue sarcomas at American Joint Committee on Cancer (AJCC).

CIRCULATING TUMOR MARKERS
Some solid tumors produce circulating markers, which might give an idea of the extent of the disease. These markers are measured in blood tests. They have little diagnostic value, but have defined implications for prognosis and treatment. An example is the carcinoembryonic antigen (CEA). The CEA is a circulating tumor marker, very useful in the follow-up of colorectal cancer. When it remains high after tumor’s surgical removal, it might indicate persistent disease. The CA-125 is widely used for monitoring treatment of ovarian cancer. The CA-125 should normalize after a well-succeeded ovarian cancer treatment. Beta-HCG and alpha-fetoprotein markers are used for monitoring patients with testicular cancer and cure is obtained only after normalizing these markers. The LDH is very important in monitoring lymphomas. The PSA is used in prostate cancer. However, caution is required in its interpretation. A high PSA does not diagnose prostate cancer. PSA is not specific to cancer and might be abnormally elevated in benign prostatic hyperplasia, which consists in a large prostate, but without malignant tumor. However, when cancer is already diagnosed, a rising PSA is directly related to the tumor extension. After surgical treatment of prostate cancer, the PSA should go down to undetected values, indicating that the surgery was radical, which means that the entire prostate tissue was removed. Although tumor markers do not participate directly in the AJCC, often very high values indicate more advanced disease.

CLASSIFICATION
Staging follows international classification systems, which describe progressive tumor local invasion and systemic spread. The most used are the American Joint Committee on Cancer (AJCC) and the Union for International Cancer Control (UICC). Staging consists on universal communication criteria with precise implication on cancer prognosis and treatment. Both AJCC and UICC are based on TNM criteria. The descriptor T shows the tumor size and invasion of surrounding tissues or organs. The descriptor N is associated with detection of cancer cells in lymphatic nodes. The descriptor M characterizes the spread through the bloodstream, affecting organs located away from the primary tumor, which is called metastases. For each tumor there are specific criteria that can be found in the international system AJCC, which might be accessed through www.cancerstaging.org. The correct treatment recommendation and its curative or palliative intention are based on cancer stage.

TREATMENT PLAN

TREATMENT INTENTION
This is the first decision that the physician has to face. Unfortunately, not all diseases are curable. Therefore, the intention of treatment should be defined as curative or palliative. Curative treatments have been very well documented in peer review journals and their indications are clear and precise. The physician should describe the treatment plan, discuss results and risks, making sure the understanding and agreement of the patient. Palliative treatments usually require more complex sharing decision’s process. Palliative treatments should combine increasing survival with better quality of life.

SURGERY
When accurately indicated, surgery is still a curative intervention for many benign diseases. For malignant diseases, their role has changed throughout history. Originally, surgery was the only method available to treat cancer. Historically, large resections have been recommended, based on Halsted’s principle of radical tumor removal. Local and regional invasion has been the most important tumor characteristic, limiting its resectability. Today, surgery continues to be an important resource in cancer treatment. Anatomical knowledge continues to be emphasized by doctors, in search of adequate surgical margins. However, the increasing use of combined treatments, including adjuvant chemotherapy and radiotherapy, has allowed more conservative and less traumatic resections.

RADIATION
In malignant diseases, high-energy machines called linear accelerators are used to provide external radiation therapy. The high-energy beams will cause direct damage to the tumor cells’ DNA and promote the formation of free radicals. The main objective of post-operative radiation therapy is to reduce tumor local relapse. New techniques are progressively evolving in a more precise definition of treated fields and dose fractionation, reducing toxicity without loss in effectiveness. They include three-dimensional conformal radiation therapy (3DRT) and intensity-modulated radiation therapy (IMRT), allowing for a more precise and secure treatment field. Currently, surgeons work in combination with radiation oncologists to produce better results with the least damage.

SYSTEMIC TREATMENT
It includes chemotherapy and hormone therapy. It is used to treat malignant diseases. Chemotherapy is a combination of cytotoxic drugs acting on rapidly dividing cells. Historically, it was first used with curative intention in the treatment of lymphomas and leukemia. Later, chemotherapy began to be used in the treatment of other solid tumors, looking for systemic disease control. Cancer is often not restricted to primarily affected organs. Early in tumorigenesis, cancer cells invade lymphatic and blood vessels, leading to distant microscopic deposits called micro-metastasis. Unfortunately, micro-metastasis are not detectable by imaging methods at cancer diagnosis. In breast cancer, high-risk patients, adequately treated with surgery and radiation therapy, might later have a systemic relapse if not treated with adjuvant chemotherapy. Ironically, the formation of tumor’s lymphatic and blood vessels is an early event in cancer development, often preceding even its clinical detection. The adjuvant chemotherapy concept was developed in order to eradicate all traces of putative residual tumor cells, decreasing the systemic relapse and mortality rate. Based on the same principle, adjuvant hormone therapy acts on micro-metastasis, but in more selective hormone-responsive tumors. For instance, it could be used post-operatively to destroy residual breast cancer cells, which express hormone receptors. Chemotherapy and hormone therapy could also be used with neoadjuvant intention. They are used upfront in the treatment of large primary unresectable tumors trying to reduce tumor volume and increase the chance of a complete resection. Both chemotherapy and hormone therapy might also be used in palliative care. When the disease turns into incurable, these methods are judiciously used for relieving symptoms, increased survival and improving quality of life. Palliative treatments involve difficult technical, ethical and emotional decisions.

CLEVER DRUGS
Much of personalized medicine is based on clever drugs’ discovery. It is already possible to identify which patients are most likely to respond, conferring higher treatment specificity. For instance, monoclonal antibodies act on their specific receptors expressed by tumor cells. Some types of breast cancer expressing a receptor known as Her2 could be treated with a monoclonal antibody called trastuzumab. Binding trastuzumab to the Her2 receptor, will block downstream signaling pathways, reducing tumor cell proliferation. Rituximab is another monoclonal antibody that binds to the CD20 receptor of B lymphomas, decreasing cell proliferation. Recently, a great number of monoclonal antibodies have been developed, both for curative and palliative cancer treatment. Additionally, a new class of drugs has been developed acting on the immune checkpoint PD1/PDL1, allowing a better recognition of cancer cells by the patient’s immunologic system.

MEDICINE AND EVIDENCES

KNOWLEDGE
Medical knowledge is based on evidence. Medical knowledge can be divided into standard and experimental. Standard knowledge means it has already been recognized globally as the best option currently available. Experiential knowledge is a technically and ethically well-designed project that may or may not prove to be useful, as it is still in the basic research or clinical trial phase.

INNOVATION
The new is not always the best. When it comes to innovation, many people understand it as something already fully tested and safe. Unfortunately, there is still no clear medical meaning for the terms new or innovation. Sometimes, what is called innovation or discovery is only based on basic research, not supported by clinical trials and, therefore, not fully validated in its effectiveness or risk. To better guide patients, the media should restrict the terms new, innovation or discovery in medical science to only describing a diagnostic or therapeutic intervention that has already been clinically tested and accepted as a best option. This would be the methodological and correct way to replace a previous less efficient diagnostic or therapeutic intervention.

RECOMMENDATIONS
The doctor is the only professional qualified to judge and guide the patient in diagnostic or therapeutic interventions. Recommendation requires very specific knowledge, frequently discussed at many international scientific meetings, requiring continuous updating. Precise recommendations are the most important step to achieving the best result.

EVIDENCE LEVEL
Doctors know how to categorize medical knowledge into levels of evidence, which is very important for the safety of the recommendation. These levels of evidence are presented in diagnostic, therapeutic and preventive interventions. There are international classifications that categorize levels of evidence. They are based on the type of clinical trial, its methodology and statistical power, which will ultimately define a degree of recommendation.

PEER REVIEW
Medical knowledge is universal. When a doctor describes a new diagnostic or treatment method, he immediately shares the knowledge and submits it for publication. Prospective randomized clinical trials allow comparison between new treatment and standard treatment. This beautiful methodology often leads to a chain reaction of scientific output. Doctors seek constant updating, participating in international scientific meetings or reading specialized medical journals. Each recommendation given to the patient is supported by papers published in a well-recognized peer review journal.

INTEGRATIVE MODEL

COLLECTIVE INTELLIGENCE
Medicine works by integrating multiple professional skills. No single doctor is capable of mastering all available knowledge. He needs to work with collective intelligence, involving consultants from complementary specialties. The interdisciplinary team improves critical thinking and qualifies the outcome. The assistant physician guides the patient through all the diagnosis and treatment process, coordinating the interdisciplinary work.

SURGICAL SKILLS
A good example of an interdisciplinary relationship is observed when the patient’s clinician recommends a surgeon. The surgeon has skills guided by the anatomy of the human body and experience focused on their specific area of expertise, for example, neurosurgery, thoracic surgery, urology, gynecology, abdominal surgery, among many other equally important subspecialties. The clinician and surgeon work together to assess the patient’s condition to undergo the proposed intervention. This concept is called operability. Based on the patient’s operability, other medical specialties may be necessary to evaluate and eventually reduce the patient’s surgical risk.

PATHOLOGY SKILLS
After surgery, another medical professional steps in. He’s the pathologist. He carefully examines and describes the materials removed by surgery. This test is called a pathology exam. After performing the macroscopic examination, the pathologist collects samples from the most significant areas of the disease. The samples are embedded in paraffin, stained with hematoxylin-eosin and subjected to microscopic sections using a device called a microtome. These tiny sections are placed on a glass slide and examined under the light of an optical microscope, which allows cells and tissues to be viewed. This phase of the pathological examination is called microscopy. Microscopic diagnosis therefore depends on the morphological patterns previously described for each disease.

COMORBIDITIES & CONSULTING
The name comorbidity is given to the set of diseases presented by the patient. Multiple medical specialties may be required depending on the number of comorbidities. Whenever necessary, the participation of multiple consultants is mandatory, under the recommendation of the attending physician. No professional is capable of mastering all medical knowledge. For example, if the patient is diabetic, a hormonal disorder linked to glucose metabolism, it is necessary to involve a specialty called endocrinology. If the patient suffers from coronary artery disease, it is advisable to hire a cardiologist. The number of consultants is proportional to the number of comorbidities.

ATTENDING PHYSICIAN
The interdisciplinary approach is not an easy task. Harmonizing the relationship between professionals’ complementary skills is essential for successful outcome. The attending physician shares the necessary multi-specialist opinions while constantly exercising a critical eye. The attending physician plays an integrative role. It also clarifies doubts and facilitates communication between the patient and family with all other professionals involved in the case. He is the conductor of a well-tuned orchestra.

SECOND OPINION

WHY AND HOW?
Anytime, the patient fills unsecure with the diagnosis or physician’s recommendation, the second-opinion is advisable. Sometimes, also the physician suggests a second-opinion, especially in rare diseases or unpredictable disease’s outcome. In these cases, the second opinion would be useful both for the patient and the physician. The second opinion is not the rule, but when needed is an intelligent decision toward a better clinical outcome.

PATIENT’S BENEFIT
When a disease is diagnosed, the patient suffers physical and emotional impact. Every effort should be made to comfort the patient, guiding them towards stable and rational decision-making. The patient’s emotional condition depends on acceptance of the diagnosis, supported by a good doctor-patient relationship. In case of difficulty in any of these circumstances, a second opinion may be helpful. The patient will have the opportunity to verify their diagnosis and expectations from another critical professional perspective. At the patient’s discretion, it would be desirable for medical professionals to exchange opinions about their clinical case. It is a mature, consensus-seeking attitude that creates a safe environment for shared decision-making. There is no ethical problem in seeking a second opinion.

PHYSICIAN’S BENEFIT
Although medical recommendations are based on international specialized journals and supported by levels of evidence, the decision-making process in each clinical case is always individualized. The doctor critically evaluates medical knowledge and makes a recommendation. The patient may express a desire to hear another opinion. Doctors should encourage second opinions, reinforcing shared decision-making. A second opinion should not be understood as a dispute between two medical professionals. On the contrary, they should join forces to better help the patient.

PATIENT CARE MEETING
A patient-centered care meeting is a situation in which two or more doctors from complementary specialties are invited to discuss the patient’s clinical case. The meeting can be requested by the patient or suggested by the doctor. The patient must authorize the participation of all professionals. This is a delicate situation from an ethical point of view, as clinical data belongs to the patient. Therefore, only the patient can release the evaluation for their clinical data. When patients are unable to do so because they are unconscious or have cognitive neurological problems, this right must be exercised by the family. As the patient has approved the patient-centered meeting, doctors can exchange information about all their clinical data. Doctors may also discuss combined treatment interventions. As far as possible, consensus should be sought. The patient is encouraged to be examined by all doctors who participate in decision-making. All information is recorded in a report signed by all doctors participating in the patient-centered care meeting.

WHEN?
There are some situations asking for urgent decision-making, which does not allow enough time for sequential interdisciplinary assessments. The medical conference convenes multiple professionals with complementary skills, streamlining decision-making and sharing critical insights. Both doctors and patients, benefit from this timesaving process.

GLOBAL VISION

EDGE OF KNOWLEDGE
Most diagnoses and treatments have standard, universal guidelines. However, there are some situations in which the attending physician needs to share opinions on a global basis. This occurs with very rare diseases, in which medical knowledge is still limited. Doctors know their peers and seek to exchange information with those who have studied the rare disease the most. When there is no consensus, the attending physician may suggest experimental treatments and check their eligibility criteria.

INTERNATIONAL COOPERATION
International cooperation is necessary in rare clinical cases or situations whose complexity is in the edge of knowledge. This usually involves specific professionals or institutions, which have worked for many years on that particular situation. Disease’s experience concentration allows for safer judgments, especially in extreme and serious medical conditions that imply the need to choose between standard or experimental treatment. The international cooperation is a current practice and should be done preferably in writing, aiming to make it official.

COMPLIANCE
International cooperation involves sharing responsibilities. The patient has to be aware that it is not just about exchanging ideas and exams. From time to time it is necessary to travel. The doctor abroad must have the opportunity to examine the patient and order tests in his own institution. Opinions given without examining the patient often do not present the same level of commitment. This is an extreme search process that requires careful assessment of risks and benefits.

REQUIREMENTS
When international cooperation involves doctors, who are connected to a hospital, the compliance is further shared between the professional and his institution. This whole context must be considered before patient’s application for an international consulting program. Medical reports must be translated. Materials should be made available for transportation. Biological material travel regulations might be required. Costs should be considered. Funding through health insurance, government or NGOs should be pursued.

EXPERIMENTAL TREATMENTS
Experimental treatments are available in many research centers worldwide. When patient has eligibility for an experimental treatment, the attending physician should refer him to the nearest center. When travel is necessary, clinical trial eligibility criteria must be assessed before the trip.

EMOTIONAL SUPPORT

DEFENSE MECHANISMS
When facing chronic illnesses, patients may exhibit some expected psychological reactions. Defense mechanisms such as denial, aggression, regression, among others, usually appear. They should not be contained. They must be respected. In a crisis situation, the patient interacts with their unconscious and chooses the best defense mechanism to achieve emotional balance.

PATIENT INFORMATION
At the time of diagnosis of a chronic disease, all patients, consciously or unconsciously, already know what they will have to face. Otherwise, there would not be so much precocity in the expression of defense mechanisms. The doctor must seek an open dialogue with the patient, respecting the pace dictated by their emotional condition. The doctor should never place his anxiety above the patient’s anxiety. Firstly, it is necessary to demonstrate empathy, which is a cognitive intervention. It is important to demonstrate serenity, emotional balance and determination to help. Patients should be encouraged to freely express their doubts and insecurities.

BEHAVIOR BY AGE GROUP
Unfortunately, chronic diseases can occur at any age. The children react naturally, having no preconceived notion of disease severity. They seek for recovery, integrating treatment to the daily life activities. Old people usually have developed lifelong resilience. Often, they have already been exposed to other diseases, learning how to deal with, transferring the learning process to the current challenge. Their concerns are more objective, related to loss of self-esteem, financial support and concurrent family distress. On the other hand, diagnosis of a chronic disease in adulthood produces several consequences in family dynamics. The adulthood comprises the most productive years of life, related to work and family responsibilities. The adult seeks medical advice in a broad technical and emotional support, not only to treat, but also to guide him or her in the recovery of the previous lifestyle. Young people usually question the diagnosis, but are more prone to cognitive intervention. They require direct language while dealing with the facts. Usually, are objective and straightforward in their questioning process. Eventually, they react aggressively, showing a trend to underestimate the importance of the treatment. They should be conducted with discipline, continued attention and affective modulation.

PSYCHIATRIC AID
Psychological or psychiatric support is only necessary when there is an emotional illness preceding the diagnosis of a current acute or chronic illness, which could destabilize the patient. Anxiety and depression are normal reactions and last temporarily, rarely lasting more than three months from diagnosis. Often, the patient alternates between anxiety and mild depression. They rarely require medication intervention. The doctor must remain open to dialogue, guaranteeing real chances of recovery.

CLUE
Emotional care is a delicate task. Doctors exercise their knowledge, perception and sensitivity to meet patient expectations. There is no school to teach patients how to face the disease. Unfortunately, the disease happens suddenly and at any time in life. It must be faced naturally and with mutual trust in the doctor-patient relationship.

FAMILY DYNAMICS

PREVENTION OF FAMILY CRISES
Diagnosing and treating a chronic illness involves the whole family. The most common symptom is anxiety. The family feels fragile for having been affected by a serious illness, with uncertain behavior and requiring immediate decisions. The patient tends to trust the family, sharing responsibility for decision-making. This is a risky context, because the family does not have the technical conditions or emotional neutrality necessary to assume this responsibility alone. A vicious cycle of insecurity may emerge. The doctor should assume a role in coordinating the family crisis as soon as possible.

OVERPROTECTION
Family should not put their anxiety above the patient’s anxiety. Family should not function as a shield, blocking the direct dialogue between the patient and their doctor. Avoiding the direct dialogue, the family has an attitude of overprotection, reinforcing ambivalence and insecurity. Family should support a good doctor-patient relationship, helping the patient in shared decision-making and adherence to recommendations.

MEDICAL LIABILITY
The physician should coordinate the family dynamics with competence, neutrality and sensibility. He must provide all the necessary information to support shared decision making. Must be always available for patient and family questions. From patients and family’s view, diagnosis of any acute or chronic disease deserves immediate care. Urgent needs, regardless of their nature, can occur at any time. Whenever the family seeks contact with the doctor, he must be receptive and secure, reaffirming the recommendations.

FAMILY ROLE
The family should encourage a free patient’s dialogue with the physician. The family can and should actively seek contact with the physician, who should inspire confidence on patient’s emotional care. Doctor and family must work together, seeking for a harmonic communication. The family must be always available to assist patient’s needs and rights, assuming a proactive problem-solving behavior.

FAMILY DEMANDS
Depending on family dynamics and history of conflicts, problems may arise in the relationship with the attending physician. The family may question doctor’s recommendation, requesting opportunity for another professional opinion. The family can seek a second opinion, whenever preceded by patient’s approval. If there is agreement, second opinion will benefit everyone, as it can be a good opportunity to reach the best outcome.

CLINICAL TRIALS

ELIGIBILITY
Basic research is carried out in biology laboratories. It includes studies on cellular biology, signaling transduction pathways, expression of oncogenes, proteins and cell membrane receptors. Basic research also investigates new drugs, describing their mechanism of action and pharmacokinetics. It is a very creative step in the acquisition of new technologies. The patients are enrolled in clinical research, only when the knowledge developed in basic science allows technical and ethical support for a rational and well-designed clinical trial. In an attempt to protect the patients, the clinical trials looking for new drug or new treatment strategy are classified in progressive phases, as shown below.

PHASE I
Phase I clinical trials are designed to study new drugs, testing their mechanism of action, therapeutic doses, bioavailability, metabolism and excretion sustained by a well-selected patient accrual. All adverse effects should be carefully reported, allowing to better defining the drug therapeutic index.

PHASE II
Phase II clinical trials are designed to test the disease response to a new drug. Usually, the phase II applies to patients in palliative care, trying to improve the survival or the quality-of-life. A high response rate observed with the new tested drug in a phase II trial indicates the need for a well-designed phase III trial.

PHASE III
Phase III trials require the distribution of the patients into two arms. The patients are randomly assigned to a standard treatment arm and to an experimental arm, evaluating the new drug or new therapeutic strategy. The phase III trial is only justified when the new proposed treatment has shown impressive results in phase II trials, that go beyond the one expected with the conventional treatments or when, despite the same outcome, there was a significant reduction in toxicity.

INFORMED CONSENT
Patient eligibility for clinical trials is supported by specific inclusion criteria and express informed consent. Research projects are only carried out in authorized hospitals and clinics, which meet all technical and management requirements. All projects must go through an ethics committee, whose main function is to ensure patient safety.

DATA MANAGEMENT

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You are invited to read the privacy policy used on the website www.4health.network and learn how we process your personal data. Here, we explain when and why we collect personal data and how we use it. We recommend your careful reading. Please feel free to email questions or seek personal assistance for additional information.

 

WHEN AND WHAT PERSONAL DATA IS COLLECTED?

You are the owner of your personal data and, therefore, we only collect your name, email, telephone number, and other personal information whenever you provide them through the 4-HSN contact form. We collect name, e-mail, telephone number, academic background, educational institution, year of completion, work experiences, and other information contained in your resume, whenever you spontaneously disclose them as attending physician, consultant physician, or registered nurse. We collect name and password when you log in to access any restricted area created by 4-HSN participation. We also collect the data you provide when you interact with us via email or WhatsApp. We do not recommend that you provide personal data in the body of the message, but if you do, it will also be collected. Remember that you are also responsible for the care of your personal data and the personal data of those you share.

 

WHY DO WE COLLECT YOUR DATA AND HOW LONG DO WE KEEP IT?

We collect your personal data to respond to your question or comment posted in the contact tab. When communicating with physicians, their data is collected for propagation and referral. Personal data processed is used for the time necessary to fulfill the purposes described in this policy. When the interaction is no longer required, data are securely deleted.

 

DATA SHARING

Your personal data will be made available to third parties, suppliers and partners, when necessary for some of the activities mentioned in this policy. We condition the processing of personal data by third parties to the strict fulfillment of the purposes, and to the commitment to the exclusion at the end of the contract or due to any other legal or regulatory reason. Our website is integrated with a secure platform to provide access to the customer area. The collection of personal data is necessary to fulfill the provision of the service. Our website may include links that direct you to third party websites. It is not possible for us to control or be responsible for the policies practiced by third parties. We encourage you to review these policies individually to ensure you comply.

 

YOUR RIGHTS

According to the General Data Protection Regulation (GDPR), you, as an individual, are the owner of your personal data, guaranteeing the fundamental rights of freedom and privacy. In addition to the right of access and information, you also have the right to confirm the existence of any data treatment, correction, portability, elimination, anonymization, blocking or elimination of unnecessary data, in addition to the refusal of consent under the terms provided for by law.

 

COOKIES AND SIMILAR TECHNOLOGIES

Cookies are tools that allow websites to store information about your preferences, through the browser, used to improve the use and functionality of websites, as well as to provide information to website owners. Our website only uses functional cookies, which aim to offer a better browsing experience to the user. We do not collect additional data, in accordance with the principles of privacy, transparency and purpose, inserted in the GDPR. In this way, by minimizing the collection of information, we are protecting the processing and disclosure of your personal data. We recommend that you continually check your browser’s cookie management settings.

 

INFORMATION SECURITY

We maintain strict internal control over access to your personal data, and we only process the data for the purpose necessary to carry out the planned activities. We also take appropriate technical and organizational precautions to prevent the loss, misuse or alteration of your personal information. Despite all precautions, the transmission of information over the Internet can eventually be insecure as it travels through several providers. Therefore, we cannot guarantee the absolute security of data sent to the Internet.

 

ABOUT THIS NOTICE

We seek to explain privacy on the site and communicate in a simple and clear way. We can update it at any time and you will always have access to the current version. We encourage you to check this notice periodically to ensure you agree with any changes. Your suggestions are always welcome.

 

LEGISLATION

Legislation varies by country and our model seeks to be comprehensive, including General Data Protection Regulation (GDPR) criteria in use in the EU, USA and Latin America.

 

* Information provided by 4-HEALTH STAKEHOLDER NETWORK in accordance with the General Data Protection Regulation (GDPR).