An innovative privacy-first channel to bring Big Data to physicians

We all live in a digital world where are surrounded by a huge amount of health data: mobile applications, smartwatches and medical wearable devices record every day tons of information about our health, such as heart rate, blood pressure, sleep analysis, physical activity and much more.

But these data are currently not accessible to physicians; for example, a patient collecting data on his food plan through a specific mobile APP, wouldn’t be able today to share it to his nutritionist in an effective way.
A real waste of information!

Medical facilities have moreover problems in continuously monitoring our health status, but low-frequency hospital data – combined with high-frequency digital devices information – can enable new scenarios of augmented and personalized medicine.

Someone I know mentioned to me recently that he noticed a slight increase in his resting heart rate in his Fitbit app over a few months period. His doctor found that alarming and decreased the dosage of one of his medications. His resting heart rate normalized after that. It would not be possible to catch that trend if the wearables historical data wasn’t available.

By the way, despite the importance of hospital data, physicians have nowadays no chances to look at them as a whole: in state-of-the-art hospitals, doctors can see all the information the patient has collected at the facility, but not those registered in other ones. People can count on trusted doctors which are everywhere, in hospitals and/or private medical offices collecting data through medical records which can only be consulted by authorized physicians working at that medical facility.

It could be argued that a patient would have the possibility to share the medical record – he has required from hospital A – to physicians carrying out their activities at hospital B; anyway these data remains hard to be analysed without a system able to give a real extensive overview. The most common scene you can see going to the doctor, it’s the one where the physician wastes a lot of his precious time wallowing through paper and digital files with a patient who is unable to tell in a clear way his past health history.

This can generate a process that could have serious implications n our health: insightful information, which can be used to diagnose new diseases or develop more appropriate treatment plans, could be hidden or escape even the most attentive physician.

Italy has tried, through the implementation of the Fascicolo Sanitario Elettronico (FSE) – Electronic Health Record, to make an important step towards the integration of patients’ health data, at least those collected from their general practitioners and public/private hospitals accredited to the Servizio Sanitario Nazionale (SSN) – National Health Service.

The FSE is the tool through which citizens can trace and consult the entire history of their health life, sharing it with health professionals in order to ensure a more effective and efficient service.

Although FSE has been supported by an exemplary and forward-looking effort, the project is deeply limited in practice, mainly due to three reasons:

1. It does not entirely work in an interoperability regime or does not yet allow the aggregation of data collected by hospitals located in different regions;

2. It is a system that needs to be populated by the specific authorized hospital and, unfortunately, not all medical facilities accomplish to this task;

3. It does not allow a usable visualization of health information, as what is shown to the patient is only piles of digitalized paper.

For these reasons, one of the pillars of iCareX platform – iTwin – has been to develop a digital channel able to integrate patient health data, collected through hospitals’ medical records and new alternative digital sources.

iTwinSense is the new iCareX mobile application, available from November 2020, allowing patients to collect all their digital health data, visualize and share them with physicinas of the hospitals that have adopted the solution. iTwin Sense was created through the principles of “privacy by design” and in compliance with GDPR, providing state-of-the-art systems for data encryption and precision sharing to authorized medical personnel only, in order to offer the highest level of consent management granularity and amplify the reach of doctors through Big Data provided in real time.

In particular, through iTwin Sense, the patient can:

• collect and integrate hospital and alternative data from mobile APPs already in use, smartwatches, medical wearable devices and innovative tests (genetics and microbiome) in a single database;

• share, through a specific Consent Management Platform, the desired data from his health profile with his trusted doctors;

• see for the first time an evolved and usable digital representation (punctual values, dynamic graphs, temporal variations, etc.) of all his health data.

In this way, iCareX wants to give life to the “digital twin” of each patient or a virtual replica of all his health information, which can serve as a test to improve diagnosis of his diseases and develop high-effective personalized treatments.

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