What healthcare for the digital era?
The term “health,” defined as a state of complete physical well-being, and its opposites disease and malaise, cover a vast array of situations, experiences, issues and stakeholders. From the common cold to chronic illness by way of disabilities and mental illness, very different challenges are involved in providing care and support. Healthcare professions, responsibilities, and patient interactions are just as varied, ranging from medical research to local pharmacies, hospitals, primary care providers and radiologists. And patients’ situations and experiences vary almost infinitely, from a patient in rural alpine areas to a patient in a major urban centre with easy access to the best public and private sector care, to an isolated senior or a disabled young person with a strong support network.
Talking about healthcare means exploring not a single world but multiple overlapping, complex worlds. That means it is an immense challenge to discuss “healthcare and digital” and describe how digital technologies are disrupting these multiple worlds. Particularly because no one is immune to the phenomenon. Doctors’ desks are now dominated by a computer, pharmacists require national insurance cards with a chip to deliver prescriptions, hospitals are fully digital, appointments are made online, test results are sent electronically... And that’s just the tip of the iceberg, the things we see in our daily lives. Other equally profound but less visible transformations are also under way. We will assess them holistically from three different standpoints: that of patients, that of healthcare providers, and finally that of medical researchers. With, in each case, the tensions between the different possible trends.
Patients are changing with digital
For patients, the first change is their relationship with their bodies and the notion of privacy. Technologies are no longer restricted to hospitals. They are increasingly available at home, as outpatient medicine expands, and are increasingly close to the body, with phones or connected objects equipped with self-measurement or diagnostic applications. They are also increasingly quite literally incorporated, in the form of contraceptive implants or subcutaneous glucose monitors which can emit real-time information. In addition to the risk of privacy violations, they are making control of one’s personal data a key issue.
The second change is spatial: while medical deserts are an increasingly long-term problem in France, the still-uncertain rise of telemedicine does offer the promise of greater proximity and reduced inequalities in healthcare access. A promise with appeal that stretches far beyond France’s borders, particularly for countries which lack adequate medical infrastructure.
The third major change, one which seems contradictory, is the fact that technologies are simultaneously making patients more independent and more dependent. They are more independent because they are more aware, have the resources to monitor their own health and adopt healthier lifestyles which are a form of preventive medicine, they arrive at their doctor’s office armed with information found online that enables a better dialogue, and they can look for and share information with other people with the same diseases on dedicated platforms. And yet they are more dependent because as hospitals increasingly use cutting-edge technologies which require complex knowledge, like genomic medicine, patients once again find themselves becoming passive.
Healthcare providers are forced to change with and because of digital
For healthcare providers, digital is creating varying degrees of instability in a number of areas.
The first is related to the emergence of patients who are armed with more knowledge of their diseases but no less anxious. This change can be experienced as a loss of power, or at least of the monopoly on knowledge, but also as an opportunity for better patient interactions.
The second shift is due to the emergence on the medical scene of a host of new technology players, which healthcare providers are more or less forced to work with, ranging from e-healthcare start-ups to artificial intelligence heavyweights.
The development of medical technologies can both enable healthcare providers to escape a certain degree of isolation to become networked, and redistribute roles and responsibilities among clinical physicians, lab biologists, and medical engineers, sometimes at expense of physicians. New techniques can also relieve them of certain tasks, in diagnostics, for example, so they can concentrate on interacting with and caring for the patient - or, at the opposite extreme, create additional bureaucratic constraints generated by the drive to virtualise everything.
Medical research facing new challenges
On the medical research side, the possibility of mobilising massive amounts of data is creating previously unheard-of opportunities in terms of pharmacovigilance, epidemiology, detection and diagnosis, and understanding the evolution of diseases and environmental factors, enabling the implementation of tailored public health policies.
But once again, the medical sector must deal with the arrival of new private sector players, with backgrounds in digital technology, not pharmaceuticals. These players are increasingly becoming independent of hospitals by recruiting their own cohorts of patients, giving them direct access to patient data. And some of them are very close to certain “transhumanist” circles and their obsession with definitively and radically augmenting humans with technology.
Beyond the attraction to the idea of boosting our capacities, generally more popular in the Americas than in Europe, the complexities of research issues and new medical practices have crystallized around the term “personalised medicine.” What lurks behind the word “personalised”? Is it just the realization of the promises of genomics and genome sequencing for all? And thus in a way the operational reduction of human beings to an ever more precise and “personalised” data profile? Or does it point to the need for enhanced clinical practices, with an increasingly humanist, patient-centric approach based on innovations like therapeutic education?
Ultimately, this overview leaves us with a sense of déjà-vu. As medical environments are confronted with technology in general and digital technologies in particular, they are experiencing phenomena already observed in other areas. We can explore these shifts through four analogies.
Et si le patient sachant était comparable au « pro-am » de la culture ?
De la même manière que la culture a vu surgir la figure du « pro-am », ce professionnel amateur , que la science découvre la capacité du « profane » à contribuer à la recherche… Voilà que le monde médical voit émerger un patient sachant, mieux informé et outillé pour participer activement de son maintien en bonne santé ou de sa guérison, déconstruisant ainsi les catégories et bousculant les pouvoirs attachés aux connaissances.
What if informed patients were comparable to “pro-ams” in culture?
Just like the figure of the “pro-am,” or amateur professional, which has emerged in the cultural sphere, or the scientific world’s discovery of “laymen’s” ability to contribute to research, the medical world is seeing the emergence of knowledgeable, well-informed patients armed with the tools to actively participate in maintaining their health or finding a cure, breaking down traditional categories and shaking up the association of power and knowledge.
What if the emergence of new digital players in healthcare was equalled only by urban giants like Uber, Airbnb Waze?
Another striking parallel: just like the various players involved in urban mobility have to deal with the emergence of businesses from the collaborative economy like Uber or Airbnb, as well as web giants like the Google subsidiary Waze, medical providers are faced with the tremendous effervescence of start-ups and massive investments by digital technology players.
These new players bring with them the same opportunities for radical innovation, the same risk of infrastructure privatisation and a weakened role for the public sector in setting objectives, and the same obligation to develop new types of multi-player governance as in the mobility sector.
What if healthcare was also being shaken up by the promises and illusions of personalisation?
A third similarity: wherever digital arrives, it generates tensions between heightened individualism and new networked organisations. A phenomenon already observed online, with increasingly individual-centric services, which are increasingly tailored to the consumer or user, but also new forms of sociability, whether temporary or sustainable, shallow or more committed, on social media and through the creation of new communities.
As medicine encounters digital, it is also encountering ever-increasing personalisation thanks to in-depth knowledge of patients, and even their genomes, and a trend which counters the hierarchical organisation of hospitals by promoting horizontal exchanges among doctors. It also encourages individuals to undertake rather narcissistic practices by using self-measurements, while offering the possibility of involvement in patient communities thanks to dedicated platforms.
What if the question of information, knowledge and their ownership was even more crucial in healthcare than anywhere else?
A fourth analogy: digital is a vector of intense circulation of information and co-construction of data and knowledge. This has led to tensions between an ethic of sharing and common ownership, typified by Wikipedia or open-source software, and the now-dominant trend of private ownership of knowledge supported by intellectual property rights.
In the medical research field, a similar form of opposition had already emerged in the field of genome sequencing in the 1990s and 2000s, pitting the “Human Genome Project,” led by an international consortium, which published its results online as they emerged, against a project by Craig Venter’s company Celera, which preferred to patent and market its results. The future will show whether medical research will continue to move towards privatized results or will contribute to enhancing our common knowledge for the benefit of all.
Digital challenges us to maintain our “good health”
The final link with the questions that have always haunted the digital world is the question of whether the large-scale implementation of these technologies in healthcare will lead to a form of dehumanisation. To what extent can a remote consultation offer the same quality in terms of listening to and caring for patients in all their complexity, without exclusively focusing on their pathologies, as a face-to-face visit? How do remote monitoring devices for seniors (smart canes, etc.) not constitute a way for family and friends to take their distance and leave seniors in isolation? To what extent could the existence of predictive information on individual’s future pathologies erode our risk pooling systems and generate a multi-tiered healthcare system?
Modern communications, from the first telephone to social media by way of e-mail, have defied predictions by enabling a vast number of exchanges and encounters, rather than cutting people off from one another. As a society, we are now forced to answer questions about the vital and sensitive area of healthcare. They are omnipresent in this dossier on healthcare and digital. And ultimately, they can be summed up in one tremendous challenge: how can we ensure that medical technologies effectively contribute to well-being for all, and that public health and equality go hand in hand?