This is a blog about a doctor’s back and forth mental jumps around past, present and future medicine and age-old truths that still make a difference.
I have now had the opportunity to follow for 45 years first-hand the many advances medicine has taken with gradually increasing speed. I started my medical studies in 1973. At that time, in addition to conducting a thorough clinical examination of a patient, the possibilities to carry out other types of medical examinations were limited to laboratory tests, native X-rays of different body parts, sometimes enhanced with contrast media, electrophysiological recordings printed on paper, body tissue biopsies. Also, explorative surgery – opening up the patient and having a look inside – was used.
Meagre palette of clinical tests – Luxury of long-lasting patient-doctor relationships
Compared to today, we had a meagre palette of medical tests at our hands. So, it was very important to hone one’s bedside skills, develop the clinical eye: learn to listen, observe, see, hear, touch, gradually gain experience on what certain symptoms tell. The stethoscope, ophthalmo- and otoscope, reflex hammer, flashlight and tune fork were our additional clinical examination tools. I am forever grateful to the many brilliant clinicians and the patients who let medical students attend clinical rounds and learn at bedside. Consultations with other doctors, listening to nurses’ observations were common practice as were repeated discussions with the patient and family members.
I worked as a hospital clinician in the 1970’s and 80’s. During that time, we had the possibility to follow patients, even for years. Getting feedback on one’s work and importantly also valuable data on outcomes of illnesses and how symptoms and clinical findings developed either spontaneously or with treatments was a luxury that nowadays is just a dream for many doctors. The new knowledge that long-term follow up brings hasn’t lost its relevance. “There is no such thing as a text book patient”, is an important learning from these follow ups. The possibility to link together clinical symptoms, selected treatments and how a disease responds to the treatment and recording also adverse, unwanted effects, is the foundation for developing personalized medicine; the meaningful goal of digital health era.
When I started my specialist training in neurology in the early 1980’s, we had to make do mainly with skull X-rays. In addition, the risky pneumoencephalography (PEG), also known as “air study of the brain” was used in especially problematic cases. In this procedure cerebrospinal fluid surrounding and shielding the brain is first removed and replaced with oxygen, helium or air. Decisions to do this procedure were tough and not done lightly. Long discussions with the patient and doctors preceded decision making. It was difficult to predict the outcome of the PEG study: Will it bring clarity to a patient’s medical problem? Where the risks of adverse effects like infection or a stroke greater than the informative value of the method invented in 1919 by the American neurosurgeon Walter Dandy? PEG was luckily gradually in the 1980’s replaced with the non-invasive and much more accurate imaging CT (computed tomography) method and a bit later came MRI (magnetic resonance imaging). Technical advances in medical imaging have since then brought us 3D imaging and fusion imaging that combines anatomy with function from microcellular to macro level.
Our digital era and advances in medicine – There is no average patient
In all areas of medicine a wide range of technological innovations have pushed forward understanding of diseases. Data obtained with imaging, physiological recordings, laboratory tests on metabolism, immune responses, infections, cancer biomarkers, genetics, microscopy of tissue samples combined with pharmacological treatments, operative techniques, rehabilitation, remote health care and long-term monitoring of physical, physiological, mental and cognitive performance of patients both in hospital and in everyday life have shown the huge variety of clinical characteristics of different disease states. This long list is by no means complete.
Great advances in data science have provided a wide range of new diagnostic tools to aid doctors in the interpretation of medical examination findings. As data has constantly accumulated, we now know that there is quite a lot of variability in the physical, bio-physiological, mental, cognitive and behavioral performance of humans. These dimensions are affected differently in individuals by factors such as age, health habits, life events, illnesses (chronic and those that come and go), responses to treatments and rehabilitation. Not forgetting hereditary factors, genetics.
Overlapping of findings between diseases in bio-physiological, as well as, mental and cognitive functions of an individual also changes how diseases are defined. We now know that most diseases are many faceted. Earlier long-term follow up of patients already pointed to this. Now we have the possibility to find answers to why there is no such thing as an average patient.
A few examples: There are people who have e.g. diabetes which is quite easily kept in check. In some diabetic patients, blood glucose levels swing from very low to very high. Managing this roller coaster type of situation is tricky. Where lies the problem? Is the disease itself of a severe type or is the problem perhaps related, at least in part, to health habits of the patient? Could the underlying cause be life stressors and a person doesn’t have the opportunity or energy to invest time to disease management?
Elevated blood pressure has several underlying causes. Depression is not one disease entity, but several. Causes of anxiety differ. The same holds true for memory problems. Poor sleep can be a result of money worries, a relationship gone wrong, jetlag, obstructive sleep apnea, back pain, difficulties breathing due to a heart problem or an untreated urine infection.
Data driven decisions – Making sense: clarity out of complexity
The vast amount of detailed data that can be gathered even from one person from the tips of the toes to the top of the head, from micro to macro and functional level, challenge a doctor’s ability to analyse and interpret the different findings – even with the aid of data science tools. Data provides many windows into human health. It can bring both clarity and complexity.
In this era when data drives decision, the importance of doctor-patient communication and good clinical examination skills should be remembered. Information on a person’s life, family history, health, medical history, health habits, hobbies, past and present medication, current symptoms and findings of clinical examinations are important building blocks of good clinical medicine and patient care. If this health and medical data is missing from data clouds, streams or lakes there is the risk that the basis on which the next layers of data are added is porous. Significant omissions or even erroneous data cause biases and hamper understanding of diseases.
When people skills beat data handling abilities
People skills are more important than data handling abilities when addressing non-medical issues related to a patient’s need to cope with the new reality: I am seriously ill. Is a person positive about the outcome of treatment or ready to give up hope? A patient’s mind is full of questions and worries: What is the effect of the disease on my daily life? Is the treatment offered too cumbersome to follow? Do I have to change my life style? Am I willing to do this? What does my getting sick mean for my family and work buddies? Do I dare reveal that I am sick and some changes in team work are needed?
In spite of all the technological advances that have in many ways fundamentally changed medicine, my strong opinion is that human interaction, is still often in the core of getting to the bottom of things: Taking time to listen to what a person has to say; reading between the lines and recognising hints that require leading the discussion to new areas, can unravel where lies the problem. It can be loneliness that is not captured with sophisticated medical technology.
Every discussion with a person either with already a known health problem or symptoms that have brought a worried person to the doctor is valuable. The worried one can be the family member of a person sitting unwillingly in the doctor’s office. Structured symptom questionnaires are not the main tool here. Actually, in today’s digital era they can be filled before-hand. A competent doctor understands that the symptoms are just part of the story. They might not even be the key with which the health problem is solved. Clever digitisation in medicine frees more time for human interaction. Years ago, a wise CTO in industrial automation, who unfortunately died in his prime years, said to me: “It is even more important to figure out what not to automate than how to automate”. I hope for this wisdom in medicine.
Sherlock Holmes of Medicine
A doctor is a Sherlock Holmes of Medicine gathering bits and pieces of information that step by step are added to the health puzzle needing solving. Some pieces of information fit together, but one should also be aware of the fact that some pieces of information can distort the picture and lead to the wrong diagnostic road. My personal experience is that the key to solving a medical problem can sometimes be unexpected. It has often been something that my patient or a family member has at some point remembered to tell. Like my patient who fast developed severe muscle weakness. The cause was a mystery for weeks. Then one day, during hospital rounds I asked him about vitamin pills. “No, I haven’t been using them. Didn´t need to as I’ve been drinking a multivitamin and iron health mixture I bought from the pharmacy.” How much have you taken per day?” I asked. “A bottle a day”, was the answer. The symptoms were due to neurotoxicity from severe overdosing of vitamins and iron.
Medical technology today enables us to see into the human body even at microstructure level. This challenges our abilities to understand what the significance of the earlier unseen findings,, now revealed, are to the health of an individual person. Are we seeing normal variability in anatomy or physiology? Can some findings of medical examinations be bio-physiological adaptations to a disease state? The relevance of clinical examinations and experience is again highlighted. It is fundamental for making sense of data where it matters most – taking care of a patient. Advances both in obtaining different types of medical data and our possibilities to gather a vast amount of data of how a patient is managing his/her everyday life should be used to the full. Today this is not yet the case.
Data sharing is an age-old practice in medicine
Building understanding of diseases on gathered and shared data is not something new. It started with detailed clinical case reports published by observant medical doctors. In 1817 an English doctor James Parkinson reported six cases with symptoms of resting tremor, abnormal gait and rigidity. Case reports alerted other doctors to keep their eyes open. New cases were rapidly identified. Actually, data recording is much older than this: Already Egyptian medical papyri describe this disease, now known as Parkinson’s. Aloysius Alzheimer published his extensive findings of a dementing disease in 1907. Since 1910 it has been known as Alzheimer’s disease.
Doctors and other caregivers must commit to sharing medical records of their patients both with each other, as well as to supporting the uploading of this information into health data banks. Building trust with one’s patients and helping them also to see the benefit of allowing their own data to be shared is needed to ensure that the large data sets contain information that represent the versatility of findings present in patients with a certain diagnose.
Data availability – A question of life and death
Taking care of privacy and data security issues is an elemental part of medical data sharing. People should not be intimidated by these issues. Advances have been made in this area also. In terms of good care, it is actually unethical to paint scary pictures on how all privacy will be lost. Patients decide: If I am travelling and fall ill, would I rather have my health data available around the world for medical experts treating me or be in a situation where this is not the case. Imagine being unconscious with a severe, life-threatening allergy to certain drugs. Due to lack of relevant information you are given a drug forbidden in your case and you are fast in even worse shape because of a severe allergic reaction. Having or not having access to a patient’s medical data can be a question of life and death.
Nowadays one cannot work as a doctor if one is afraid of technology and overwhelmed by large amounts of medical and health data. The willingness to share also the data gathered by different care providers is a must. I hope patients also understand the importance of this. Without the ability to link data to practice, a patient’s health problems and clinical symptoms, we cannot develop expertise with which to understand the relevance of medical data that, not so long ago, wasn’t even available to us. It we forget to invest in good clinical work we face the risk of getting lost in details and losing the big picture.
The biggest threat for good decisions is lack of adequate time needed for thinking. The relevance of data at hand has to be assessed ¬ also after it has been crunched and algorithm handled by computers.
Medicine has now reached the phase were research provides understanding to the truth that seasoned clinicians have known from experience: “There is no such thing as a text book patient”. In fact, data science paves the way to personalised medicine – the foundation of which is being able to identify the characteristics of an individual patient that are relevant for tailored treatment. Making sense of data should result in more tailored, effective treatments with minimised adverse effects. If barriers are built that prevent data sharing we will lose this opportunity.
Awesome technology and timeless wisdom in the service of good care
Many of you probably know Rembrandt’s famous painting of 1682 “The Anatomy Lesson of Dr. Tulp“. In the early years of my career, explorative surgery ¬ “let’s go in and have a look” – was used as a diagnostic method. Now we have detailed whole body scans, soon combined with virtual reality, with which to dive into the human body to have a look around. However real-life listening, observing, communicating – human interaction is still the basis for good care. So, let’s not let awesome technology make us forget this timeless wisdom.