By Josier Vilar* and Guilherme S. Hummel**
The successful model of the Open Banking system is a reference for a similar initiative in the health sector: the open data platform for individual data Open Health, which is leading the way in the world. Like everything new and turbulent, the first reaction is rejection. Resistance to change is inherent in human nature, at its core being conservative.
We’ve mistakenly approached Open Health as an opportunistic idea for health plan operators to use medical information to identify their clients’ portfolios. This simplistic and mistaken view only serves the interests of those who want to avoid at all costs that the citizen is the master of his own destiny in health.
For the facts:
(1) The National Open Health Platform (Open Health) project is being developed by DATASUS, which is called the National Health Network (RNDS) and is part of the ConectSUS project;
(2) relates to the sharing of medical information records among all clinical cases serving the patient, whether for diagnosis, treatment, or emergency care;
(3) Such sharing is only possible with the full consent and authorization of its true owner, the patient, following LGPD guidelines;
(iv) the digital records will be in the “cloud”, connected by networks, and accessed through procedures and criteria defined by the Application Programming Interface (API) and as long as the individual permits;
(5) Patients may allow access to their information stored in their health plans or in the SUS itself, always and only if it is in their best interest;
(6) DATASUS does not support the improvised signal of the Open Health model, published by national authorities and news agencies.
Open Health is a game changer. To date, most structures of care do not have electronic records, and if they exist, they do not even share them with the patient. Our clinical lives are spread over hundreds of professionals and structures of care who have assisted us throughout our lives, and our medical history (the most important tool to aid clinical decision making) is ignored throughout the continuum of care.
That is, if an individual has a health plan for working in a company and becomes unemployed, he begins to get help from the SUS. All your data disappears in the archive paper. SUS or any public or private agent helping you will start over.
This lack of participation leads to system fragmentation, causes about 35% of wastage, encourages medical errors and creates enormous difficulties in reaching those most in need, who wait long periods to be seen. Across the world, health systems are increasingly becoming networked ecosystems, where worker autonomy is being replaced by the interdependence of all. For this to happen, open platforms are needed, in which the public sector works in a network with the private environment in sharing patient-authorized data.
Thus, open health, conceived and implemented with transparency and efficiency, could be the greatest achievement of the Brazilian society since the adoption of the SUS. In 2021, the United States enacted the “21st Century Therapeutics Act,” which requires “sharing clinical data with any institution whenever permitted by the patient.” The same is true for the United Kingdom, Canada and other countries. Putting the importance of the citizen as an owner of his data up for public discussion, and sharing it for whatever reason suits him, is a huge leap. Choosing to stay grounded in the name of exclusive interests is also jumping back.
* Physician, is the chairperson of the Health Innovation Forum
** Digital Medicine Specialist at the Electronic Health Institute (EMI)
