Tag: patients

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Blockchain Patients

The Dark Side of Medical Data Trading

Longitudinal data, i.e. data collected from an individual at multiple points in time, can be very useful to medical researchers and provide valuable insights into health and illness. A famous example is the Framingham Heart Study, which was initiated in 1948 and continues on today. Researchers have followed three generations of participants, collecting and analyzing data to successfully identify the common characteristics and risk factors associated with cardiovascular disease. This type of health data use is common in clinical research and epidemiology, where aggregated data can reveal important information that leads to improved patient care and public health practices. However, health researchers motivated by advancing medical science are not the only ones interested in longitudinal data collection. Commercial companies motivated by profit are interested too.

There is a multi-billion dollar industry that exists around the buying and selling of medical data. Despite the fact that this is a common practice, many people are unaware of it. Data brokers pool data from hundreds of millions of pharmacy prescriptions, medical records, insurance claims, etc., and then slice and dice the information to sell to interested parties. This is technically allowed under the Health Insurance Portability and Accountability Act (HIPAA) because the data is intended to be anonymous. The medical information is not tied directly to a name, social security number, or detailed address. However, data brokers still add unique numbers to the data they collect, which allows them to build detailed patient dossiers by linking different pieces of information to the same individual. And with today’s advances in data mining technology and the vast amount of data available, the re-identification of anonymized data has only gotten easier.

Overall consumers have a troubling lack of control when it comes to their own medical data. We’d like to think the information we share with our healthcare providers remains private but this is not the case. In fact, the legal right of commercial companies to collect and sell health information without the explicit permission of the patient has been upheld by the Supreme Court. In the 1990s, the dominant player in the medical data trading industry began selling data to pharmaceutical companies on what individual physicians were prescribing to patients. These drug companies would then use the information to better tailor and target marketing and sales efforts. Once people caught on and started to complain about the invasion of privacy for profit, a few states passed legislation to limit the trade of prescriber-identifiable information. The major data broker then took them to court and won on corporate “free speech” grounds.

So why are the rights of data brokers to sell data privileged over the rights of patients to manage their own health information? Patientory does not have an answer to this question but we do believe in the power of blockchain to shift this paradigm. Distributed ledger technology has the ability to democratize data access by securing and validating data through a network rather than a single database. In addition to addressing cybersecurity and interoperability issues, blockchain technology can place the control of medical data sharing into the hands of individual patients through an app like Patientory’s. We believe consumers have a right to access their own health information and limit or permit the use of it as they see fit.

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Blockchain Patients

Data Brokers Have Access to Your Health Information, Do You?

In today’s technology-driven world, data is an inevitable part of our lives. From fitness wearables to wireless medical devices to electronic medical records, the digitization of health information will continue to be a common practice. There is another common practice in the healthcare industry that most people do not like to talk about: medical data trading. A multi-billion-dollar market exists for information found in medical records, including prescription records, hospital visits, blood tests, insurance records, and doctor notes. Commercial companies are able to buy and sell this data without violating HIPAA because the information is not directly tied to an individual’s identity. However, the records bought and sold are often still associated with an age, gender, partial zip code, and a doctor’s name.

In the past, the stripping of a name, address, and social security number from a medical record would have been sufficient to protect anonymity. In today’s world, this is not the case as the re-identification of seemingly anonymized data is only getting easier. A straightforward data mining tool can easily cross-reference multiple databases to aggregate data and re-identify individuals from their theoretically private medical information. As an example, Harvard University Professor and computer scientist Latanya Sweeney was able to link zip codes, birth dates, and gender from a voter registration list to publicly available medical data, including hospital discharge records and health care cost data on hospital visits. And this was research conducted almost twenty years ago! The capabilities of data mining technology have only improved alongside the vast amount of data available today.

While consumers have the ability to increase the privacy of their non-medical data and control access to it, there is a frustrating lack of control when it comes to medical data. Even with the advent of electronic medical records, patients still do not have access to comprehensive health data across providers due to a lack of interoperability. Additionally, there is no way for patients to opt out of third parties using their anonymized health data for commercial purposes or otherwise. Theoretically, patients could choose healthcare providers based on whether or not their health information systems sell anonymized data, but in reality, this choice is limited by health insurance companies and specific health plans. If the patient is truly at the center of healthcare, then the management of health information needs to reflect that.

Patientory wants to change this narrative by applying blockchain technology to electronic health information. In addition to blockchain’s robust cybersecurity abilities, it can democratize data access in favor of the consumer. Instead of storing and distributing data through a single database, multiple copies of the same data are shared on a ledger distributed across a peer-to-peer network of users. When one copy of the ledger is changed, all of the other copies are updated in real-time and the validity is guaranteed by the network. By using a distributed application like Patientory’s to access electronic health records, patients will have the power to decide exactly who can access their medical data and for what purpose. The corporate rights of data brokers should no longer be privileged over the rights of consumers to control their own health data.

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Blockchain Healthcare Providers Patients Public Health

Restoring Trust in Public Health with Blockchain Technology

Trust is essential to building and maintaining strong, healthy relationships, and the relationship between a patient and their healthcare provider is no exception. Patients with trust in their doctors are more likely to follow treatment plans and medical advice on lifestyle and family planning issues, reducing their lifetime cost of care and increasing their quality of life. A 1999 study found that sixty-two percent of patients with high levels of trust always take their prescribed medication and follow their doctor’s recommendations, but only fourteen percent of patients with low levels of trust do. As another example, for patients with H.I.V., trust in medical providers is associated with more clinic visits, fewer emergency room visits, increased use of antiretroviral drugs, and improved reported physical and mental health.

Mistrust, unfortunately, has been an increasing trend in healthcare. In 1966, almost three-fourths of Americans said they had great confidence in the leaders of the medical profession; by 2012 only one-third expressed this view. Combined with the overall decline in Americans’ trust in institutions the last few decades, the potential threats to public health become apparent. A lack of trust can lead to individual patients refusing vaccinations or forgoing the flu shot, which can have potentially deadly consequences for the greater population. During the 2014 Ebola outbreak, only thirty-one percent of the American public said they trusted public health officials to share complete and accurate information about the Ebola virus and a mere fourteen percent said they trusted the government to do the right thing. If these patterns of mistrust continue, future responses to public health emergencies could be drastically impaired.

So what can be done to rebuild trust in our healthcare systems? A recent report by Accenture reveals two clear steps that healthcare institutions can take: over ninety percent of health executives believe that treating customers as partners and ensuring the security of consumer data are both important or very important for gaining consumer trust. Consumer-centricity and data security are also two of the key benefits of blockchain technology, particularly when applied to electronic health records (EHRs). Traditional EHRs suffer from a lack of interoperability and cybersecurity due to varying practice standards and legacy IT systems. This makes sharing comprehensive health data securely across healthcare providers and institutions especially challenging and leaves consumers with little control over their own data.

Patientory is currently using the PTOYNet blockchain administered by the Patientory Association to shift this paradigm and empower patients to take control of their medical records. Blockchain, or distributed ledger technology, democratizes trust by removing the ‘middleman’ in transactions and allowing information to be recorded and shared by a community. Rather than relying on a central trust authority, blockchain relies on cryptography and a peer network for verification. All of the participants have a copy of the ledger updated in real time, providing a comprehensive, immutable record of information. Patientory’s blockchain-based distributed application allows patients to decide exactly who can access their health data and for what purpose. We believe improving consumer access to health data information is the first step to increasing trust in healthcare institutions.