Foreword
Digital service provision has been the primary way of reaching out to clients by the private sector for at least 20 years, even longer in some sectors and some countries. In Estonia, online banking was launched 30 years ago in 1994. By the turn of the century, visiting offices was the exception, not the norm, when subscribing to telecommunication and other well-standardised services. Estonia’s online tax board was launched in 1997. Almost no one under the age of 50 has seen a taxman in Estonia.
Of course, in most countries, the digital services of the public sector had to compete initially with the traditional, appointment-based service model. Partially, this was because the digital services were not offered universally, nor linked to a single government portal, and weren’t accessible with a universal digital ID. Instead, the variety of methods for access and identify verification created confusion and delayed development.
Consolidation followed in most countries. As people mostly transact online in their everyday lives, governments have had to follow the trend. So, it was no longer possible to force physical appointment-based services. While most governments still do not provide single-access universal service portals for all public service delivery, they have made sectoral advances. For example, a single digital space for business management, then social service provision, and finally, healthcare.
Citizens' control over who can see information about their health is crucial. It is less of a problem in Europe, where governments often take full responsibility for organising healthcare. The cost of insurance, therefore, does not depend on the health patterns of any individual. Instead, it is based on solidarity. In systems where all or part of the insurance cost is carried by citizens directly, there is always the risk of health profile-based prices or, in the case of high-risk patients, a lack of providers willing to deliver the service. It is hard to regulate against these risks, even if most governments try to do so.
Even in solidarity-based health insurance models, people are generally worried about who can see the sensitive data.
On the other hand, people understand that centralized healthcare databases reduce the need for different healthcare providers to perform repetitive actions. This saves time for citizens and money for the government. Therefore, it is the job of the government to provide necessary safety clauses for citizens, allowing them control over their personal health data.
For example, Estonians can donate their DNA samples to the Estonian Genome Bank in exchange for their genetic risk profile. People are free to choose whether or not to share that data with their family practitioner. For the rest of health data, citizens can verify that only their relevant healthcare providers have accessed their medical data and that no other doctor, nurse, or hospital has done so. In this way, while complete digital health records exist for every citizen, each knows that personal information belongs to them, neither to their doctor nor to the government.
This has made it easier to accept consolidated healthcare records and systems. After all, if your medical data is stored on paper files, you have far less control over who has read it than you do with digital records, where every reader leaves digital fingerprints. (If the system is adequately built, of course.)
Based on personal experience, I can testify that fully digital personal health records offer far superior patient experience to an alternative where each provider closely guards patient data. They say they do so for safety reasons, but in reality, they do so very often because of business interests. The risks related to integrated systems can be managed by adequate safeguarding and fire-walling methods. Since many paper-based systems have long used the data safety arguments in order not to transfer to digital ecosystems, considerable efforts may be needed to convince patients that digital healthcare records allow, in fact, better data protection and a superior level of personal control over sensitive health information.
A final warning - fragmented digital health systems that do not allow patients to transfer all their medical information - including pictures, analysis, etc. to the practitioner of their choice - will deliver neither savings nor satisfaction to patients. Therefore, digital healthcare systems must be designed to overcome the fragmented nature of many healthcare provision models! Even if it is in the business interests of hospitals and practitioners not to share the results of tests they ordered for their patients, the law must be clear that these results belong to the patient, not to the hospital. Therefore, they must be fully accessible via digital data systems to other providers if the patient wishes.
Photo by Anna Zaugarova - e-mail, CC BY-SA 4.0, https://commons.wikimedia.org/w/index.php?curid=109824790