Patients can have a say in their treatment with the help of information technology.
There is a creeping revolution taking place in healthcare—whether we define it as medical assistance in the event of illness or a family nurse-practitioner’s advice on healthy living. An authoritarian regime is being replaced with a democratic one. The revolution is proceeding at a threatening pace and cannot be stopped; it is supported by information technology—it is e-health.
Doctors have had indisputable authority in matters of health for thousands of years—they know where diseases come from and how to fight them. In the 21st century, doctors can use technology that literally allows them to control life and death, and, if it is so wished, change a person’s gender.
On the other hand, it is clear to all that decisions affecting our health are made more often without a doctor’s advice by each and every one of us. We make the decisions during our everyday life: to eat a certain foodstuff or not, to drink something or not, to go and exercise or not, etc. Many little decisions have an enormous collective impact. And, even though a doctor will write us a prescription if we are ill, it remains in the individual’s hands whether to take the medicine and follow the doctor’s advice. It is known that 50% of people who have received prescription drugs do not take them in the prescribed manner.
Using information technology in improving or maintaining health—i.e. e-health—helps primarily with closing the gap between the roles of specialists with extensive knowledge (doctors) and decision-makers with great influence (people).
E-health helps people to understand their health condition better and presents potential choices for improving it, according to the doctors’ understandings. This facilitates making the correct decisions and improves cooperation with healthcare specialists.
E-health helps doctors to bring information about a person gained from various sources together into a comprehensive whole and prepare a treatment plan that best suits the person’s individual characteristics and preferences. This may also mean that cooperation between specialists, each of whom only works with a part of a larger problem, will become easier. As a result, the treatment is more person-centred and efficient, as well as of high quality.
At the system level, digital data allow the quality and efficiency of healthcare to be evaluated more quickly than hitherto—considering all factors that have an impact on a person’s health has not been achievable alongside the provision of healthcare services. The very same algorithms that coordinate the logistics of millions of postal deliveries, buy shares on the stock market or match advertisements to user profiles in search engines allow the discovery with increasing accuracy of how the complex combination of a person’s individual traits and behaviour and the healthcare services provided to them contribute to the final outcome.
The democratisation of healthcare thus means the gradual transfer of the burden of decision-making from the specialist “mediators” to ordinary people. Or, rather, the paternalistic model transforms into one of co-decision, in which the doctor and patient sit in front of a computer screen together and consider the various alternatives for intervention on the basis of the same information by combining medical aid and the person’s behavioural choices.
As with all technological innovation, e-health is initially a clumsy solution with varying levels of quality. However, taking into account the experience of other sectors, the efforts of millions of people and machine learning, there is no reason to doubt that, in terms of factual knowledge, people will quite soon know nearly as much about their health as the healthcare professionals aiding them. Already, family doctors in Estonia say that an increasing number of patients have managed to find out more details about their illness than any doctor ever could about any of their patients’ conditions.
Thus, in a democratic healthcare system, a person is not an object on which treatment is implemented but rather a subject who, by making decisions, chooses the direction of his or her own health, including the associated activities of the doctors. The healthcare system is an active participant in the process in a supporting role, and e-health helps to translate between the two worlds as well as to make them cooperate with each other efficiently.
How does this concern Estonia? How far is our e-health system from this vision of the future? Actually, not that far, since, in Estonia, a solution has been found for one of the most complex technical components—the safe integration of data originating from various sources. A health information system uniting data from all healthcare institutions and, if necessary, from other sectors, is an asset. To comprehend this, one may contemplate why countries far more powerful than Estonia have invested billions into creating this type of capability, but still envy our elegant solution that currently remains out of their reach.
To realise the vision of the future described above, Estonia needs to harness the existing potential in doctors’ and nurses’ work computers and patients’ smart devices. The capability to implement positive solutions fast is proven by the already legendary digital prescription and the recent digital medical certificate proving a person’s fitness to receive a driving licence: the former went from idea to 80% application in nine months, the latter in just six. In fact, some Estonian hospitals have found that a digital system for ordering and planning radiological investigations or an application with which a doctor may comfortably administer patients’ data increases efficiency by a third, i.e. the hospital is able to perform 30% more investigations or a doctor service 30% more patients in the same length of time.
If we examine the local criticism of e-health more closely, we see that there is a need to homogenise the general stimuli in the field of health policy: the fees of healthcare institutions should be linked to the quality of results, not the volume of services performed; those networks of service providers that cooperate efficiently should be rewarded with the money saved by the Estonian Health Insurance Fund owing to them; patients’ feedback should be considered in reimbursing healthcare institutions, or healthcare budgets should be added to local-government budgets in addition to social-welfare allocations—these sums could be used to provide treatment and care at home instead of using hospital facilities. These are not the only examples, but decisions in the field of healthcare policy much like these are the main and most powerful drivers of development in all countries where e-health is developing swiftly—for example, Denmark, Sweden, the US and Singapore.
We could learn from such systems and quickly implement desktop applications developed for end-users, while we can already offer the possibility for analysing large amounts of data based on the extensive joint use of health data, and, for example, developing the possibilities of personal medicine based on the joint use of genetic and health data.
The development priorities of e-health over the next five to ten years and the ways of achieving them will be agreed in the new Estonian e-health strategy, which will be ready by the autumn. It is important for the population that, instead of listing technical applications, the objectives should be:
- a specifically improved and measurable quality of healthcare
- cooperation between various service providers
- application of the principles of individual (i.e. personalised) medicine in prevention and treatment, and more specifically prevention activities that consider a particular person’s risks
- using the potential of telemedicine to create a more efficient healthcare system.
In addition to other e-services, the long-awaited digital hospital reception or smart applications are a natural part of e-health that offers actual, quantifiable value for people and society.
Does e-health involve risks? Undoubtedly—just like any other activity in life.
Health data are especially sensitive, which is why it is feared that privacy is in danger, as digital data can be processed conveniently and in large volumes. But in fact, it has been proven many times in Estonia that the greatest security and privacy risk is connected with the weaknesses of people, not technology. When someone looks up data in a paper file, they leave no trace, but our ID-card-based authentication leaves a very clear trace of each data use, on the basis of which healthcare providers have been punished where a violation has occurred. This transparency, including in the case of national databases, is a luxury that the specialists of other countries admire and want to learn from.
Another, more serious, issue is the overabundance of information occurring due to the large quantity—and often low quality—of data. At best, this may hinder reaching a decision, while, at worst, it may even be misleading. Time and determined work help against noisy data. It has been proven all over the world that the quality of data can only be improved by using it—no one would bother to make improvements solely for collecting data; that would be pointless. However, if a stimulus supported by healthcare policy were created, owing to which the collected information was used for making decisions, the users of the data would start to demand correct data from the primary data inputters. This, in turn, would create pressure to agree upon specific data standards, and rules for entering data conveniently and checking data quality.
It may be that the most intangible anxiety is connected to changing the trust-based relationship—when a computer (a machine) begins to stand next to or come between a doctor and the individual. This is explained by the fact that the computer would provide support in decision-making, as the volume of data exceeds the amount that can be processed by a human brain, but also by the fact that the interpretation of health-related information—thus far only offered by a doctor—would begin to compete with the probabilities provided by a computer. In this question, we can hope that time will make us wiser and a new balance of responsibility and obligations will be found in the new situation.
Digital solutions have greatly changed business, tourism, entertainment, banking and other sectors. Today, education and healthcare are developing quickly and in a very interesting direction. The common denominator of radical digital changes in all fields is that solutions that used to be created by a small circle of specialists and sold to society at a high price are now becoming gradually and cheaply available to everyone, while taking account of their individual preferences. This is a revolution in progress.
This article was published in ICDS Diplomaatia magazine.