Italy and Europe are going through a historic period in which they find themselves facing socio-health challenges that are as unexpected as they are serious: an increase in chronic illnesses, with estimates of around 50 million citizens affected by one or more of these pathologies; an aging population constantly on the rise (30% by 2060); lack of self-sufficiency; lack of access to primary care by at least 10% of the EU population; evolution of the family model and, last but not least, the resulting need to contain public health costs.
To that end, as can be seen from the huge investments in research and innovation at the national and european level, models for provision and utilization of health services are being completely rethought, with ICT playing a key role in facilitating and implementing changes. Technology such as cloud computing, l’artificial intelligence, l’the internet of things, home automation, i big data, support systems for decision making, to cite just a few, shall be (and in some cases already are) at the foundation of prevention, diagnosis and future treatment (which of course included personalized, precision and in-silico medicine).
It is clear that today the attitude and inclination of various countries toward these changes vary widely. If, for example, in the United States the future reality that we have outlined is in many cases already present, many European countries are just now timidly starting to turn toward these new models which, if they are not properly conveyed, designed and administered, with the direct involvement of all stakeholders, could be destined for failure. Indeed, if doctors, nurses, specialists, policy makers and skilled workers in general are already active parties in this process of change, what role will the patient play? Will he continue to be the citizen patient as he has been until today or must he too adapt to these changes?
How will the patient’s role change?
The patient is surely the person who more than all others must adopt a new perspective, projected towards the idea of becoming a digital patient who will be the custodian of a body of significant information on his own behalf (behavioral, nutritional, physical and environmental just to name a few) which will supplement that already available to healthcare institutions and enrich the knowledge at his doctor’s disposal.
The patient can no longer be seen as someone who passively undergoes the treatments provided him by doctors. He is a proactive patient who knowledgably documents himself, participates in shared-interest communities on the Internet, and has apps of all kinds available to collect data and thus monitor his state of health, lifestyle, diet, vital statistics, etc. The patient will thus become a key player in the new healthcare systems conceived of as integrated (in terms of process and information) and trained to “revolve around” the patient and thus transform him into the system’s center of gravity. What we are speaking of is patient empowerment which, according to the definition in the WHO 1998 patient empowerment which, according to the definition in the WHO 1998 Health Promotion Glossary, is the process through which people gain greater control over decisions and actions affecting their health, including above all, through greater control and greater knowledge of the related data and information. It thus facilitates a transformation from patient user to patient protagonist of the healthcare system.
What are the opportunities for patients?
The new digital patient, armed with a smartphone and portable devices able to capture specific data on his behalf, will be able to avail himself of the following resources:
- being aware, thanks to genetic data, well in advance, of the types of risk that he is subject to and thus actively contributing to prevention or delay of the onset of illness
- obtaining, thanks to the quantity of data at his disposal and the improved computational power provided by High Performance Computer infrastructures, simulations related to his body’s behavior and thus receive timely, targeted, personalized and precise care
- monitoring his state of health and/or preventing the onset of illnesses, becoming the gatherer of enormous quantities of data that are, in turn, useful for the doctors providing treatment
- interacting with doctors digitally and, thus, in a much more timely and efficient way, only when it is truly necessary
- only staying in hospital for the duration of the intervention and then managing recovery within the comfort of home, thanks to sophisticated monitoring systems which allow him to always stay in contact with specialists
- managing hospital stays much more efficiently, going to hospital only when the medical devices with which he’s outfitted sound the alarm
- getting in touch with other people affected by the same illness through themed communities available on the web which will allow him to increase his awareness of the disease and to find comfort from those in the same position
These characteristics can become reality only when we are able to clearly and unequivocally establish the boundaries and rules through which information can be managed and shared between different european health institutions. Although there have been steps forward for certain specific illnesses in establishing a network, a silo mentality is still prevalent and it must be replaced with a logic of sharing and syntactic semantic interoperability so as to allow the new digital patients to be cared for not by a single hospital but by the entire european healthcare system.
The new regulation on protection of data (GDPR), which must be implemented by all Member Nations by next May, together with policies and the huge investments in research and innovation which the EU and its Member states are putting in place to facilitate this sharing, are the only tools which can truly enable Big Data technology in the healthcare sector, so data can be put to a more efficient and effective use.
Matteo Melideo
