In view of the recent SAAQclic fiasco and the swamp in which the federal Phoenix payroll system got bogged down, the imminent digitization of the Quebec health care system can only arouse the greatest apprehensions. Some warning signs are already cause for concern. One example among many: after a hospitalization for a serious heart disease, a one-year computerized medical follow-up was planned for me. What ensued was a chaotic deployment, a series of mistakes and misunderstandings. If I hadn’t taken matters into my own hands, there would have been no follow-up.
But let us return to the general tendencies in which these personal experiences fit. Within several large public service systems, it is acted as if all citizens are equipped with the necessary equipment and skills to navigate smoothly in the digital ocean that surrounds them, not to say increasingly overwhelms them, day after day. However, this vision is light years away from reality. While it is true that a majority of Quebecers have at least one cell phone (four out of five, apparently) or a tablet (about three out of five), the fact remains that hundreds of thousands , for reasons which belong to them and which are completely legitimate, do not have one.
And among those who own and have access to the Internet (about 90%), there are many who, comfortable performing simple operations, find themselves helpless when things get complicated. How many bugs, for example, with Clic Santé, whose merits have been so much praised? Some had to do it several times or ask for help (not always obvious) from friends or neighbors before getting an appointment. And what about all the excluded from this wonderful world?
Digital exclusion
At the time of the first vaccination offensive, it was in fact noted that a category of citizens had not been vaccinated. They were often sick, destitute, often elderly, living alone at home and not having access to Clic Santé; those who, however, should have received the vaccine first. Volunteers reported the feeling of abandonment experienced by these people, who felt “dropped” by the system. Yes, there was a telephone, but the waiting times were often unreasonable, dissuasive.
In all areas of public services, but first and foremost in health, designing fully digitized programs cannot be done without failing large sections of the population, among the most vulnerable. And it’s not just about old people. We can also think of people with disabilities or deficiencies, or those who do not have sufficient resources to keep their devices up to date and functional.
To avoid digital exclusion (when many have only the word “inclusion” in their mouths), there must always be another option (the telephone), and this option must not be seen as an exception, a second best, but as a mode of communication just as honorable as the other. Paternalism and condescension, so detestable in this matter, must give way to respect.
Can the public authorities demand that the entire population be “connected”? Certainly not, the authoritarian overtones of such a regime would be intolerable. Yet it is this drift that was brushed against with the ArriveCAN application, of sad memory. Indeed, even after leaving Canada for only a few hours, many residents of border towns or villages wishing to return could not do so without completing the famous application on a phone or tablet.
Those who did not have these devices or were unaware that they had to complete the application after a short absence were imposed a fourteen-day quarantine with monitoring and daily constraints, even if they did not show any symptoms of COVID-19 and had a valid federal vaccination certificate. There was a manifest abuse of power and a totally unnecessary waste of public funds.
A disembodied and post-human world?
To return to the field of health and the digitization with which we are threatened, in-depth reflection is required. In governmental offices where “globalizing” decisions are often taken, the decision-makers, and before them the lobbyists who determine their choices, are surrounded by squads of technicians whose mission consists in persuading their counterparts of simplicity and the efficiency of the planned system. However, the recent fiascos have clearly shown that the ministries and public organizations are incapable of evaluating the merits of the arguments put forward, being too influenced by the soothing and reassuring speeches that are served up to them by technology companies hungry for profits.
Before any major IT program is put in place and deployed, shouldn’t there not be a thorough review, by an independent body, of all aspects of that program, not only from the point of view of its quality and its technical efficiency, but also from a human point of view? Does the program respond to real needs, to serious requests, does it offer guarantees of confidentiality (crucial in terms of health)? Will the program be easy to access, will it have perverse effects (depersonalization, exclusion, dehumanization)? Are other options planned?
Undoubtedly, technology can render great services, even in terms of health, but on the condition that it is used wisely and without excluding anyone. In this particular field, we must constantly keep in mind the importance of the relationship of trust that must exist between doctors, medical staff and patients. A sick person cannot be reduced to a number or a small box. The “formatting” inherent in digitization is hardly compatible with the human aspects and the complexity of medical problems.
Clearly, many pitfalls stand in the way of medical digitization and, without deep reflection and critical distancing from the blind fascination that technology still exerts, disaster can quickly strike and cause damage that is difficult to repair.
Germaine de Staël, one of the great minds of her time known as Madame de Staël, wrote at the dawn of the 19e century: “The progress of science makes necessary the progress of morality because, by increasing the power of man, it is necessary to strengthen the brake which prevents him from abusing it. Wouldn’t she have issued the same kind of warning about technologies?