How Do You Ensure Patients Have Control over Their Data?

Ensuring that patients maintain control over their private data is a hot button issue, and government organizations are increasingly attuned to it. The Office of the National Coordinator for Health IT (ONC) and the Centers for Medicare & Medicaid Services (CMS) require that personal data should be easily accessible and shareable by patients. Let’s explore how healthcare providers can fulfill these requirements with the help of technology.
4 min read
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By Egor Kobelev
VP of Healthcare Technology, USA
How Do You Ensure Patients Have Control over Their Data?

Healthcare organizations are particularly susceptible to fraud and hacks, largely because of the significant amount of private data they store. According to Breach Barometer, in the first six months of 2020 alone, more than 41 million patient records were stolen in 572 separate incidents. And with all the intricacies of the current healthcare system, patients have little-to-no control over their health records, meaning they often do not know that their data was stolen.

Blockchain, however, can help ensure privacy as well as allow patients to trace the movement of their information. Let’s discuss how.

Why Patients Should Control Their Healthcare Records

Today, patient information is scattered across healthcare institutions and is largely disorganized, with few overlaps or methods for communication. Over the lifetime of the patient, their healthcare records will be increasingly fragmented across healthcare organizations.

Analytics companies are accessing this data, without explicit consent, in order to link lab results with patient charts and billing.

Most healthcare facilities now realize that this data belongs to the patient, who should have a say over if and how their data is used. Some advocates for patients’ rights take it a step further and contend that, if patients give their data to develop a product or service, they should receive financial remuneration.

However, the reality is far more pragmatic. For example, 23AndMe, a genomics company that offers commercially available genome sequencing, recently licensed data from its users to GSK, a major pharmaceutical company. While 23AndMe claims that the records were anonymous, the data itself is actually identifiable, especially when given to a company like GSK, which can cross-reference the information with their own data. In this type of exchange, the consumer has no control over their own genetic information and also does not benefit financially.

How to Track Patient Data

Blockchain is crucial in tracking the records. Healthcare information can be encoded in the chain, giving patients full control over their data. This could also result in a marketplace where researchers and healthcare providers ask patients for permission to use their records.

Blockchain is beginning to be used for government-controlled healthcare systems as a means of securing patient information, avoiding fraud, and allowing patients to govern their data. At least two dozen companies currently offer blockchain-based products in this domain.

Colorado-based BurstIQ offers blockchain technology that protects data while maintaining strict compliance with HIPAA rules. Intermountain Healthcare, a Utah-based, not-for-profit system of 22 hospitals, is already among BurstIQ’s clients. Another out-of-the-box example is Texas-based company Factom, which puts blockchain to use in storing digital health records.

Nebula Genomics, one of several companies that are breaking into this market, uses 23AndMe’s testing model and adds blockchain technology, which returns control of genetic data to the consumer. The tech being developed by Nebula Genomics is meant to secure genomic information, so that it cannot be shared with anybody else unless consented to by the consumer.

Why Unique Patient Records Are so Important for Researchers

The protection of personal health information does not stop at genetic data. Companies like Doc A.I. and Znome contend that all information pertaining to an individual, including the unique signature of a person’s microbiome, should be protected.

A microbiome is the collection of bacteria that live in our digestive system and assists us in extracting nutrients and digesting our food. Each person has a unique microbiome signature that begins developing before birth. This bacteria is essential to gut health and can offer quite a bit of information about an individual. Researchers have looked into how biomes are different between geographical regions. For instance, microbiome colonies that are fairly common in China will not be as prevalent in the United States.

Research into the importance of the individual microbiome is continuing to gain momentum. Scientists are finding that it may play a critical role in healthcare outcomes for chronic diseases and conditions that develop over time.

While the science of microbiomes continues to be debated, it is clear that this unique biological signature is incredibly important and personal for each individual. So, like each person’s genome, this information should be protected. Blockchain offers a solution that can reinstate the patient’s ownership over their data.

What’s Your Next Step?

Integrating all of your company’s healthcare records sounds like an unmanageable goal because of their high degree of fragmentation. The data companies working with Humana or Aetna might be different from the companies working with United Healthcare — and many smaller regional carriers that serve millions of people in the country. The main challenge is to get insurance companies and healthcare providers on the same page when it comes to the importance of patient security and privacy.

DataArt has helped numerous healthcare companies eliminate costly administrative inefficiencies and improve their quality of care by adopting blockchain technology. At ClinicAll, a global technology company providing software solutions for hospitals, we have assisted in designing a blockchain-driven patient community.

If you are looking for a partner who can help ensure the success of your distributed ledger project, contact us today to discuss your needs.

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