Sapere aude, the famous phrase of Kant generally translated as “dare to know”, could be marked as the institutional start of democratization during the Enlightenment. Man rid himself of his immature beliefs and grounded his life in reason and argument. In the following two centuries, this self-liberation of citizens led to empowerment in most cultural, political and economic institutions. Remarkably, health institutions stayed significantly behind. Healthcare became institutionalized and more widely available, but when it came to understanding our own health, all citizens remained laymen, helpless when confronted with illness. Therefore, scholars and physicians have repeatedly advocated the democratization of the doctor-patient relationship to empower patients and promote their self-reliance. With the advent of digital health and the internet, the empowerment of patients seems to be partially achieved, but not every part of the relationship can or should be democratized.
For more than half a century, scholars have envisioned and advocated the democratization of the doctor-patient relationship. In short, it means the shift from paternalistic doctor-centered medicine to more democratic and patient-centered medicine. While the first is characterized by authority and knowledge asymmetry, the core principles of the second are equality, mutual participation, long-term engagement, the patient-as-a-person (instead of a biological reduction), and shared decision–making. These principles should result in clear benefits for the patient: empowerment, autonomy and, importantly, better health outcomes, because who knows the patient better than he knows himself.
Although the scientific discussion of democratization can be traced back to the ’50s, in the last two decadesdigital health has enabled the empowerment of the patient. It started with the internet and Google. Information about health and disease is only a few mouse clicks away. Within minutes, patients can acquire information about any symptom or disease. And then wearables arrived on the market. To measure is to know. Endowed with wearables and dwelling in environments packed with sensors, citizens now continuously collect health data, monitor biometrics and self-diagnose disease. As well-known cardiologist Topol describes in one of his latest books, the patient is evolving into a sort of COO of his own health.
The rise of informed, connected and engaged patients in the daily practice of healthcare has also evokedcriticism of democratization. Physicians who once strongly advocated it have become more reserved because they see patients turning away from expertise, demanding second opinions and overly trusting data. Furthermore, scholars are questioning whether we really want patients to interpret their health datathemselves and stress that we should take into account how this will affect them mentally. All in all, having more digitally engaged and participatory patients is undeniably beneficial to healthcare. Yet, some nuance and differentiation are warranted.
First of all, neither of the terms in the equation refer to fixed entities, which means “the physician” and “the patient” don’t exist. Naturally, some relationships might become more democratized than others. A lot of severe conditions demand expertise and clinical interventions, which leaves less space for participation. However, in the treatment of chronic long-term diseases such as diabetes, shared decision–making and engaged patients can be extremely helpful. The same holds true for the minor illnesses and everyday care general practitioners and nurses are often occupied with. For them, having well-informed and engaged patients constitutes a good starting point, eases the conversation and speeds up the care process.
Second, health and disease are becoming more complex and multidimensional. For instance, co–morbidity (i.e. when someone is diagnosed with multiple diseases or conditions at the same time) is occurring more frequently and will be one of the main challenges of 21st-century healthcare. In light of the above, it is tempting to perceive democratization as a fruitless campaign with anything more complex than a simple virus or cold:patients simply haven’t studied medicine for eight years. Still, it might be useful to reflect on the participatory role and think about what we can reasonably expect from patients. For example, the mere process of collecting health data and monitoring biometrics, without interpreting the data, is already meaningful. Patients can manage their health database and preselect important metrics, perhaps supported by Artificial Intelligence. This patient-AI alliance could focus on selecting risk factors, early detection, and disease prognosis. The doctor arrives at a later stage. In this scenario, democratization is not so much direct empowerment of the patient, but a telehealth feature that mainly serves to streamline care paths. The ultimate challenge here will be to keep false positives within manageable rates. With everybody connected and always monitoring, we might prevent more, but also detect more, and time is one of the most precious assets in healthcare. Besides the cost of overdiagnosis, it also worries people unduly.
This brings us to the third point of nuance. In the ultimate sense, democratization refers to the ideal of a mutual and equal relationship with minimized knowledge asymmetry. However, the role of physicians far exceeds their knowledge, they are “healers” in the broadest sense of the word. Healthcare is the sum of effective therapy and moral care. Physicians and nurses always transcend the medical practice in a way. They listen to the patients’ wishes or worries, guide them through their illness and thereby help people reconcile with their disease. In this context, an unequal and asymmetric relationship isn’t problematic but instead beneficial for patients. It is about the doctor we trust and rely on, and who has a special sort of spiritual or even religious air about him. Furthermore, all his words, procedures or his mere presence could elicit placebo effects. Consequently, the “disenchantment” with the doctor as a result of overly enlightened citizens could undermine the mental care provided by physicians. Of course, the (placebo) effect of healers is modest with most major medical conditions, but especially in long-term chronic disease management, mental healthcare, and psychosomatic pathologies, this beneficial side of an asymmetric doctor-patient relationship should not be underestimated.
To conclude, if we want to fully reap the benefits of democratization with engaged and well-informed patients, the doctor-patient relationship first needs to be differentiated and dissected. Subsequently, some parts of healthcare systems could be democratized while other parts remain untouched.
• Higher health expectations of demanding patients and extremely engaged health citizens might eventually result in a sort of “boutique healthcare”, comparable to the currently rising “boutique fitness”. However, part of this trend is the loss of middle-market companies, only very expensive small boutiques (e.g. David Lloyd, Saints and Stars, and Gustav Gym), and low-cost mass-market gyms (e.g. Fit for Free and Basic fit) will survive in this market segment. It is questionable whether this outcome is desirable for healthcare.
• With the advent of digital health, who becomes in control of which health data has become a pivotal topic of debate dividing stakeholders and scholars. Topol argues that if we really want to realize the benefits of the digitally engaged patient, we should give patients the right to own their medical data. He points to blockchain technology and cooperative organizations such as HealthBank to support this transition. By contrast, interoperable data systems and integrated services are perhaps best developed and operated by big tech companies such as Apple.