SOCIETY | Oct 11, 2016

Data in healthcare: a lost heritage?

How important is data in healthcare? And what is their potential? Giancarlo Galardi’s vision

For years, when it was difficult to obtain data and it was difficult to process, statisticians and sociologists squabbled for generation about their relevance, pertinence and there were heated discussions ongoing about the transformation of data into information and its separation into governance or operational information.

All of a sudden, when it became more simple to store large amounts of data in Dataware Houses, the entire previous discussion was put aside, forgotten.  After a while, we realized that we had the data, but that it didn’t tell us much, and huge amounts of energy were spent on the so-called clean-up.

pulse-trace-163708_1280The networks, Internet and the development of inter-operable systems progressively made the sending and exchange of data possible, and this started up the so-called “season of information flows”. Ministries, Regions, Istat (Italian Statistics Bureau) and several other bodies have requested and demanded that doctors and healthcare facilities send their data to higher organizational levels, creating a huge accumulation of data and information. Data and information that left their place of origin at considerable cost to be stored in centralized archives in a given reality, without almost ever providing a prompt information-bearing return for the subjects that the data refers to. In fact, data debt was one of the terms used. Only of data debt of production realities owed to other so-called governance subjects, splitting healthcare organization into several centers and a large peripheral area. A peripheral area with several data debts for several subjects in the center, all entitled to request the setting up of data flows, of the same data, or almost, creating complexity, workloads and duplicate activities as each subject requested the discharge of the supposed debt through different channels and methods.

Wonder, scandal and confusion, when it was realized that reports and statistics produced by hospitals, regional administrations, the Ministry, Istat and other bodies were different and therefore all that work and cost were maybe not pointless, but a waste.

The cause of such problems was found in the excessive number of processing points and a solution was therefore devised which entailed starting up large-scale procedure centralization operations, and thus data banks.

In healthcare, as in other sectors, the idea came along at a certain point, rightly under some conditions, that the citizen should be at the center of the system and not organizations and doctors, and that the main goal was to restore his health data to him. Countless efforts have been made to build the electronic health dossier by regional administrations that have thus justified the accumulation of individual data.

Much talk and not much action has been done regarding open data and making it obligatory by law. So much energy lost and dispersed, we might say!

Another major thought: if data is gathered by a single procedure, everything is much simpler. This was and still is the guiding thought, with another nuisance, privacy, that rightly finds that the large accumulation of personal information, in large, single data banks, is potential a risk for people’s privacy rights. Privacy requires that the organization of and access to personal data, in particular sensitive data, must only occur according to the strict principle of pertinence and relevance that this data covers, for the role played by the subject accessing the data.

The circle is complete.

Parallel to all this scarcely productive activity and relative discussions, which have used up considerable resources, the real world has carried on. A new digital world has been created, a real eco-system comprising social platforms where citizens willingly consent to all their information to flow. Technologies have been developed that allow huge amounts of data to be processed, with sophisticated analysis tools, but all this new world is still alien to the public healthcare sector, where there are still no patient or probably patient registers (a lot of discussion to be had here too), there are no single codes for services, there is still talk of a single clinical record, regional systems are set up for managing electronic health dossiers managed by regional offices with the excuse that it is all in the citizens’ interest, we do not have single booking systems even if they are pompously called Single Booking Centers (CUP) and the Ministry of Health still complains, almost half a century later, of not having the data, forgetting that it contracted the nearby Ministry of Economy and Finance to manage several healthcare information flows.

We often state that we have not learned anything from the success factors of Internet, nothing from the success factors of platforms such as Google or YouTube. We can now state that we are not learning anything from the success factors of social platforms.

The basic elements of all these systems, and the ideas that generated them, are the same ones.

Flexibility, availability, utility in answering the needs perceived by users as essential, intervening on processes directly and not creating further superstructures for recovering data and their return, these are the factors of success. Data, the true mine, is the sub-product of this approach and are the resource, the primary product for anyone who planned and achieve that approach.

Internet: it will never develop because it is not secure and reliable like other networks.

Electronic mail: when on earth will everyone have email?

Google: yes, but when I search something on Google, how do I know that all the answers are there?

Facebook: I will never put all my data in there.

APP: no, the web will stay a primary element, I don’t think we will use the telephone.

These statements now make us smile, but we are not learning anything from all these cases of success.

What can they teach us and what do we need to think about?

We need to start by giving digital citizenship to the main players in the healthcare system – citizens and doctors – intervening directly on production processes and bearing in mind the success factors that history has identified.

We take large organizational process such as the provision of healthcare, that starts with a prescription, continues with a booking, payment, provision and reporting. Let’s imagine a single platform, it can be regional or national, that isn’t important, but that has the characteristics of “a platform” and not those of a “single centralized system”, where the user registers, the general physician prescribes, the doctor or patient books, being able to see all the public or private opportunities, the patient or a family member makes the payment, the providing doctor obtains the list for his work, records the provision of his services and makes the report available. A similar digitalization platform of the entire process brings together the subjects, it becomes useful as it simplifies everyone’s work.

The service will be perceived by everyone as useful as it resolves and helps professional activity, and will not be a pointless and costly debt to fulfill. We will thus have the personal detail databases, process data, and activity data as a sub-product of a service infrastructure. An infrastructure measured and assessed by everyone, on levels of organizational and process improvement in working daily life. We are talking of an infrastructure and not of a single monolithic system. We are talking of an infrastructure that is an element of attraction, convergence of other systems and not a new edition of older centralized procedures. We will also be sure of the quality of intercepted data, as it will be verified daily by subjects, citizens, medical and administrative staff, while carrying out their work.

The same reason that we can do it for treatment and care processes that involve both hospitals and territorial facilities.

In this setting, the healthcare dossier, but not the current one, becomes an essential tool for a doctor’s work, as he can take all data and certified information from it and not simply a collection of data, a simple system output of dubious quality and therefore dubious use.

Making systems flexible, making them attractive and therefore useful, aiming them to cover entire processes and not limit themselves to single functions, creating a true eco-system where the main players in the healthcare world, citizens and professionals, are fully-fledged members, interconnecting systems through shared platforms, giving priority to horizontal system compared to vertical ones: these are all things that would allow a response to be given to the need for improvement in work, efficiency and efficacy, and at the same time and without any organizational effort and waste of money, gather data and information for better understanding the phenomena, the actual correspondence of organizational structures to needs, monitoring and real time control of processes.

Why aren’t there social systems, certified for security by a public authority available to doctors and professionals, through which doctors can learn, compare, give and receive scientific information, that are interconnected with management systems?

We have enormous technological opportunities and great opportunities represented by the possibility of storing, managing and processing huge amounts of data (big data).

We have the possibility of managing non-structured data (no sql database).

We have the possibility of interconnecting and having things speak (Internet of Things).

We have the possibility of creating eco-systems, exploiting technological and semantic standards (open linked data and open services).

We have enormous possibilities for the predictive processing of non-structured data.

We have a great responsibility as a society (political), and as professionals: that of not knowing how to make the most of these possibilities and translate them into perceived improvements in the world of public and private healthcare facilities for all players, citizens, doctors.

Results that can be achieved only via a systemic approach, creating digital eco-systems and bringing the wealth of information that is not dispersed amongst thousands of organizations to a single unit, digitalizing processes and not individual functions, and aiming at developing flexible platforms, avoiding the thought that centralization is a short-cut.  Unfortunately, it is easy to foresee that it won’t be like that

Giancarlo Galardi