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Does the blockchain allow patients to recover their health data?

Health data at the heart of all debates

Since the start of the health crisis, not a week has gone by without talking about health data in the mainstream press. Whether it is a health data leak in a hospital, the hosting of healthcare data, Health Data Hub through Microsoft or the processing of pharmacies data by IQVIA, each week brings its share of news.


Unless you are a seasoned professional in the health data world, at first glance, there is nothing reassuring about this news. They even tend to generate some fear or discomfort in patients. Thus, many begin to wonder what happens to their health data once it is collected in a hospital, in a city office or in a pharmacy. According to the media, this data is, at best, sold, at worst, stolen. Nothing very reassuring! But what is it really? And what can patients do to protect themselves against certain abuses?

Data is the backbone of the healthcare system

The health system relies heavily on the collection, processing and use of data. It can be medico-administrative data intended to ensure reimbursement of their care, clinical data allowing better management by the doctor, or finally, data from social networks, which offer researchers an interesting basis for the study of human behavior. Whatever use is made of it, health data is essential to the proper functioning of the health system.

The problem is that patients often have very little visibility into the fate of their health data. Couple that with a few high profile scandals and you will get doubts, mistrust and a growing loss of confidence in the systems in place. If the instinctive response is to want to recover your data or to block access to it, this is not necessarily the most viable and appropriate response. But then, what should be done?

Restore confidence in the use of health data

Focus on more transparency

The general public’s reaction of mistrust towards many actors dealing with health data is due to a great lack of understanding of their activity and a lack of transparency on the way in which this data is used. Patients often have the impression that there is a black box between when their data is collected and when a service is rendered. Worse yet, sometimes patients are not even informed that their data is being collected or that it will be used for a particular purpose. This opacity leaves room for the imagination and for disaster scenarios. While very often, the reality is much less spicy than the fiction.

Thus, many patient associations are campaigning for more transparency on the use that is made of health data. Most of the time, in the health sector, these uses revolve around research or the improvement of care. Studies show that patients are more in favor of sharing their health data for these purposes. In the specific case of rare diseases, 97% would agree to share their medical data if this makes it possible to advance research on their pathologies (Courbier, 2019). If this desire to share is so strong, it is because it is also subject to a strong condition: transparency on collection and use.

Are patients really able to manage their health data?

More and more patients want to know when their data is being collected but also to decide under what circumstances it can be shared. In other words, they want to manage their health data à la carte. But is it really possible? Is it realistic to ask a patient to systematically give their consent each time their health data is used? This would imply that he would spend a large part of his day validating data access permissions.

If we look at the behavior of Internet users, many people do not even take the time to give their consent line by line to the use of their browsing data when they arrive on a website. Many just click on “Accept everything” to save time. Will it be the same with medical data? Would it be reasonable to hand this responsibility over to the patient? Wouldn’t it be more interesting to establish “trust by design” in the health system?

If the questions are jostling and the answers are still few, there are nonetheless digital tools that can help increase confidence in the use of health data. Among them, the blockchain.

Blockchain, a trusted tool propelled by the health crisis

Since entering the healthcare industry in 2017, blockchain has gone through its ups and downs. After a phase of hype, it experienced a little slump when the initial enthusiasm gave way to certain obstacles and disappointments. Nevertheless, the health crisis and the questions relating to health data have definitely brought it back to the forefront.

In the UK, two NHS hospitals in South Warwickshire in England are now using blockchain to track the temperature of Covid-19 vaccines. Some of them, like the one produced by Pfizer and BioNTech, need to be stored at very low temperatures before being administered to patients. By keeping an immutable digital record of temperatures, these two NHS hospitals can ensure that vaccines have been stored in the right conditions.

Other projects focus on the distribution and administration of Covid-19 vaccines. Recently, Moderna announced a partnership with IBM to explore the use of blockchain and other technologies to track vaccine batches throughout the supply chain. In parallel, the World Health Organization is working in partnership with the Estonian government to develop a tamper-proof vaccination certificate, also powered by blockchain technology.

To go further on the blockchain and the traceability of health products.

Beyond creating more efficiency and transparency in the distribution and administration of vaccines, the blockchain has also been talked about because it allows to guarantee the integrity of health data.

Blockchain to reassure patients about the use of their health data

Blockchain, a tool of trust and transparency

Thus, the blockchain would create a framework of trust between all health players. With more visibility on the use made of their health data and the possibility of objecting to certain treatments, patients become more sovereign over their personal information. Moreover, transparency can become a strong argument to encourage patients to continue to share their health data in a secure environment and thus fight against mistrust. Although blockchain is not a solution on its own, it remains a powerful tool to create “trust by design” in the healthcare sector. Coupled with an educational approach and a real process of transparency vis-à-vis the general public, it is able to help restore a degree of trust between patients and stakeholders in the health sector.

As an immutable digital ledger, the blockchain is an excellent tool for restoring trust between several actors with divergent interests. However, in the health sector, there is a glaring lack of trust between patients and other actors, especially when it comes to the use of health data. What could be the contribution of the blockchain then?

Use cases of blockchain in health data

First, the blockchain can serve as a tamper-proof and time-stamped audit trail allowing a set of transactions to be traced. This can be, for example, a consent given by a patient, the anonymization of a data set or its transfer to a third party. Thus, patients can follow the entire data lifecycle in a transparent manner. Since no one can intervene to modify this register, the patient can have complete confidence in the traceability data.

At the same time, the blockchain can also allow the implementation of smart contracts to define access rules to health data. For example, a patient may decide to oppose certain treatments or certain uses of their data. These preferences, registered in a smart contract, are executed automatically. This again helps to create a framework of trust in the use of health data.

Thus, the blockchain would create a framework of trust between all health players. With more visibility on the use made of their health data and the possibility of objecting to certain treatments, patients become more sovereign over their personal information. Moreover, transparency can become a strong argument to encourage patients to continue to share their health data in a secure environment and thus fight against mistrust. Although blockchain is not a solution on its own, it remains a powerful tool to create “trust by design” in the healthcare sector. Coupled with an educational approach and a real process of transparency vis-à-vis the general public, it is able to help restore a degree of trust between patients and stakeholders in the health sector.

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