Data ownership and open health: A revolution in healthcare?

How defining patients’ data ownership and effective control over their data will change the dynamics and transform the healthcare ecosystem.

Who never went through the experience of having to go to the doctor and take a pile of exams in films and papers? Or even having to access different platforms to obtain your medical history, knowing it will be incomplete or very hard to make sense of all the information?

The reality when it comes to healthcare data is of a great decentralization of information, with asymmetries between the various actors in the ecosystem, increasing inefficiency, raising costs, and compressing margins at the weakest ends of the chain.

More than that, patients have no control over their data - neither in terms of managing its use, nor from the point of view of its value. Yes, there’s a lot of value in healthcare data. However, patients are unable to obtain benefits for every service and even to generate income from their data due to the challenges of accessing, combining, and making this data available.

In this context, we begin to envision the emergence of the concept of “open health” as a model with rules and standards focused on increasing security, efficiency, and agility in data sharing and in transactions among institutions, healthcare professionals and any company that participate in the patient's care cycle.

Open health isn’t necessarily the beginning of this revolution, much less the end. It is a catalyst for the transformation process the world is going through.

Data ownership and its obstacles

In general terms, property is anything that is owned by a person or entity. It is the right that gives its holder powers to use, enjoy and dispose of the thing, as well as to recover it from whoever unjustly possesses or holds it. When we think of ownership in the context of healthcare data, there are obstacles for the data subject - in this case, the patient - to be able to use and dispose of their data and specially to recover them. They are:

Decentralization

Patient data is scattered across different doctors, laboratories, hospitals, pharmacies and even among operators and healthcare plans that are part of their care network.

Digitalization

There are still actors and procedures that act analogically, requiring a migration to digital. This migration, which many call “digital transformation”, takes time, and requires not only investments in technology, but also cultural and procedural adaptation by healthcare professionals.

Interoperability

This refers to the technical ability to combine different systems and process involved in the patient’s journey. Registration schemes, the meaning of attributes, nomenclatures, models, and metrics vary between systems, processes, and equipment. For an effective use, there must be a standardization using a specific ontology for the health care network. In Brazil, the RNDS - National Health Data Network - came as a Federal Government program that aims to address exactly this point of interoperability.

Once these and other obstacles have been overcome, it will be possible to address the possibility of effectively returning ownership of data to patients. What would be missing then? An environment and an application in which patients could receive, access, analyze, use, and share their data with whoever they want, thus having full control. This is already being materialized through the combination of new technologies that provide to patients a data wallet.

Patients’ data value revolution

Patients interest in having ownership of their healthcare data ranges from the convenience of having their entire history in their hands, to the increased confidence in medical diagnosis, the possibility of predicting diseases and adverse conditions, and even the possibility of generating income.

Among all the human dimensions that generate data - identity, behavior, finance, credit, consumption - healthcare is one of the most valuable. This high potential comes from the large volume of data generated in this segment, the enormous potential for combining and generating information to meet different use cases, and the context surrounding sensitivity and how unique each data set is.

There is interest and potential value to generate income to patients on their medical history, medication consumption, presence of chronic diseases or even their genetic data. The possibilities are many and tend to grow when the ecosystem entities understand that it will be possible to access this type of information fully respecting the rights of the data owner – the subject - who must consent every detail of each use.

A relevant aspect regarding the value of healthcare data and is that there is a compensatory tendency. The more severe and rare the patient's condition, the more their data is worth. There are medical records of patients with rare diseases being marketed for thousands of dollars for the purpose of research and development of new drugs.

Open Health as a catalyst

The discussion about opening healthcare data and its respective implementation has been gaining momentum in various parts of the world. In countries that have initiated practices of open banking and open finance the topic gained even greater relevance.

When patients are placed at the center of healthcare assistance, it becomes easy to realize how much this openness of healthcare data will deliver positive impacts, once transparency, accessibility and interoperability have the main objective of reducing information asymmetries. And there is no doubt that patients are the ones who suffer the most from those asymmetries.

There are many unanswered questions about the best specific format of open health, but its premises constitute a fundamental step for the revolution of data ownership and data income generation. Let's hope it happens soon, benefiting not only patients, but everyone involved in the healthcare ecosystem.

A real-life example in Brazil

During the COVID-19 pandemic, Brazilian’s Ministry of Health developed and structured Conecte SUS, a program for informatization and integration of Brazilian citizens healthcare data among private and public systems. This program was supported by DATASUS, the IT department of the Brazilian public healthcare system (SUS) in Brazil, with the development of a website and an app where any person can have access to their clinical history, including COVID-19 vaccines and examinations, surgical procedures, delivered drugs and other information. It is probably the first nationwide electronic medical record, connecting and integrating healthcare data from different sources in Brazil.

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Article written in partnership with Bruno Aracaty, director of operations at DrumWave, a company focused on data ownership and monetization.

Publicado na coluna de janeiro de 2023 na The Yuan.