Tag: health data

Categories
Blockchain Healthcare Providers Patients

Blockchain: Reimagining the Future of Health Data

It’s time for us to reimagine the future of healthcare information technology. More specifically, it’s time for us to rethink the management of personal health information, i.e. data from electronic health records (EHRs) and wearable devices. Data will continue to drive the technology that is becoming increasingly intertwined in our everyday lives and this remains especially true for healthcare.

From internet-enabled medical devices to fitness trackers, developments in digital health are creating new opportunities for comprehensive patient care and raising new questions about the ethical management of healthcare data. At Patientory, we believe the correct application of blockchain technology will allow us to effectively take advantage of these opportunities and provide answers to some of these questions.

Challenges for Comprehensive Care

Despite the advent of EHRs, medical records still suffer from a lack of interoperability. IT systems are often siloed and unique to the provider, which means a large amount of time and resources are spent simply requesting, sending, and compiling health information. This makes it challenging to create a comprehensive picture of an individual’s health across multiple providers, especially when there are variations in insurance coverage and geographic location over time.

Additionally, we are starting to see an increase in clinicians relying on patient-generated health data in conjunction with clinical data. This type of information includes health histories, symptoms, lifestyle choices, biometrics, etc., and can better inform care decisions because it provides valuable insight into an individual’s overall health and well-being in between medical visits. While patient portals and EHRs allow for a small portion of this data to be compiled, today’s technologies could be leveraged more effectively to improve health outcomes.

Challenges for Healthcare Data Management

In addition to being siloed, legacy healthcare IT systems are often aging and lacking in robust cybersecurity measures. Hospitals are particularly appealing targets for cyberattacks because their daily operations rely heavily on up-to-date information from electronic medical records,  and stolen health information is worth ten times more than a credit card number on the black market. And the more an EHR is fragmented across multiple providers, the higher the patient’s risk of personal data being exposed to people with malicious intent.

Since all of a provider’s EHRs are stored in one place, a successful breach will give a hacker access to all of that information at once. What’s especially troubling about this is that individuals have little control over the storage of their own personal health data and can do little to prevent this. There is an overall lack of patient control when it comes to the access and use of their own medical data, and this reflects broader societal questions about data management. Legislation, including HIPAA, simply has not caught up to the growing role of data in our lives.

Blockchain as a Solution

When applied to EHRs, blockchain can potentially address these issues. A blockchain consists of encrypted blocks of data that are immutable and linked together chronologically in a chain. In a healthcare setting, these blocks of data could be doctor’s appointments, surgical procedures, x-ray images, prescriptions, blood test results, patient-generated health data, etc. Copies of the blockchain would be distributed across a specified network of users and any additions to the chain would be updated for all users in real-time. Individuals would be in charge of sharing the decryption key for their own associated blocks of data with their chosen healthcare provider(s).

With a distributed application like Patientory’s, individuals would have access to a comprehensive picture of their health that includes compiled data from EHRs and wearable devices. Breaking the silos of traditional medical record storage would not only make the process of sharing EHRs significantly easier, but also result in more robust security. By integrating with PTOYNet distributed and decentralized blockchain network our application is able to adhere to both HIPAA and robust security standards.

Categories
Blockchain

Blockchain: Unlocking Healthcare Data to Empower Patients and Improve Care

“Blockchain has the power to: a) reduce costs and increase operational efficiency, b) build trust while improving the quality of comprehensive care and c) empower individuals to take charge of their health. It’s time for us to reimagine the future of healthcare information technology.”

– From Blockchain: Unlocking Healthcare Data to Empower Patients and Improve Care

In a recent blog post for the Healthcare Information & Management Systems Society (HIMSS), Patientory CEO Chrissa McFarlane shares her vision for the application of blockchain to healthcare data. If correctly implemented, blockchain technology could help empower patients and improve care by providing these specific benefits:

  • Aggregated personal health information
  • Improved data security and integrity
  • Patient-centered control of data access and use

To learn more about how Patientory’s distributed application contributes to these goals, click here.

Categories
Healthcare Providers Patients

The True Potential of Patient-Generated Health Data

There is no doubt that aggregated health data will continue to shape the future of healthcare. There are vast amounts of data available in today’s society, and health researchers are tapping into it to advance medical science. Large sets of data are regularly compiled and analyzed, and the findings are used to predict epidemics, cure diseases, provide better preventative care, and lower healthcare costs, among other positive things. The widespread adoption of electronic health records and the increasing prevalence of internet-enabled medical devices are creating even more opportunities for valuable data collection. While this unlocks very exciting possibilities for healthcare scientists and providers, where does the patient fit into all of this?

Patient-generated health data (PGHD) is defined by The Office of the National Coordinator for Health Information Technology as “health-related data created, recorded, or gathered by or from patients (or family members or other caregivers) to help address a health concern.” This includes health and treatment histories, symptoms, lifestyle choices, biometric data, etc. When used in conjunction with existing clinical data, PGHD can provide additional insight into an individual’s overall health and better inform decisions made by care providers. The use and sharing of PGHD can gather important information about an individual’s well-being between medical visits, allow for shared decision-making in preventive and chronic care management, and ultimately improve the cost, quality, and coordination of care.

Trust between patients and providers is a cornerstone of the medical profession and higher levels of trust result in improved health outcomes. In the Digital Health Technology Vision 2018, Accenture found that ninety-four percent of health executives believe that treating customers as partners is important or very important for gaining consumer trust. By its very nature, PGHD creates a valuable opportunity for an individual to become a true partner in their own care. Through the process of supplying data the provider would not have access to otherwise, the patient is given a voice and empowered to actively engage in their health. The power of this voice is further supported by today’s wellness apps, wearables, and fitness trackers, which are increasing consumer engagement with personal health data. However, as with any opportunity, there are potential challenges that need to be addressed.

First of all, electronic health records (EHRs) suffer from a lack of interoperability. The major benefit of PGHD is it can supplement the information found in EHRs to provide a more comprehensive picture of an individual’s health. This benefit cannot be fully realized if patient data is fragmented and siloed across multiple providers and IT systems. Another concern is data privacy and security. We are faced with the reality of hackers and data breaches almost daily, and consumers will be less willing to provide PGHD if they believe their personal information is at risk. Patientory’s distributed application uses blockchain technology to address these concerns and empowers individuals to compile and manage their own health information from multiple providers and wearable devices. They can then securely share their comprehensive health picture with the healthcare provider(s) of their choice, which allows all stakeholders to benefit from the use of PGHD. Learn more about our solution here.

Categories
Patients

Returning the Control of Health Data to the Consumer

The vast amount of data available in today’s technology-driven and hyper-connected society is astounding. We create data everywhere we go with our smartphones, tablets, and laptops, and the increasing prevalence of the Internet of Things means that even more of the devices we interact with on a daily basis are gathering and sharing information. The application of this information through the creation and interpretation of large data sets, i.e. big data, is becoming an increasingly valuable economic force. Organizations in both the public and the private sectors are leveraging big data across industries, including healthcare, to develop more effective practices, inspire innovative breakthroughs, and better serve consumer needs.

The growing role of data in our lives and the data trading markets that have arisen raise important questions about data access and ownership. Who rightfully owns data, the individual creating it or the organization collecting it? Who has the right to access all of this information and what are they allowed to do with it? Who ultimately has more control when it comes to data use, the individual or the organization? Unfortunately, there is not a clear answer to these questions because in many cases our laws simply have not caught up yet. When it comes to electronic health records in the United States, providers are technically the owners (in every state except New Hampshire) since the data is recorded and stored on their IT systems.

One example of new data-related legislation, which came into effect just this year, is the General Data Protection Regulation (GDPR), enacted by the European Union. The goal of the law is to ensure better data protection and privacy for all individuals by enhancing their rights when it comes to the handling of their personal information. The new rules require organizations to ensure that consumers explicitly consent to data collection and clearly understand the type of information being collected. Individuals in the EU now have the right to access their personal data, to request corrections to inaccurate data, and to restrict the use of their data. Although the full impact of the GDPR remains to be seen, it is a step in the right direction towards consumer empowerment when it comes to data.

There is no doubt that big data will continue to shape the future of healthcare. It is being used to predict epidemics, cure diseases, provide better preventative care, and lower costs, among other positive things. However, individuals have a surprising lack of control when it comes to their own health information. They are often asked to sign away health data ownership via blanket consent forms at times when they are scared or vulnerable, such as before surgery. Consumer rights need to be evolving alongside the use of data in healthcare. Patientory believes individuals should be able to easily access their own comprehensive health data and manage the use of it on their own terms. This is why we developed our distributed application. You can learn more about our solution to healthcare data access and control here.

Categories
Public Health

Lessons in Health Data Management from the General Data Protection Regulation

This year, in the European Union, the General Data Protection Regulation (GDPR) came into effect. The GDPR is groundbreaking legislation for consumer rights when it comes to data protection. We all create data everywhere we go with our internet-enabled devices, but the use of that data is still largely unregulated. The GDPR was enacted to ensure that organizations comply with the following actions:

  • Fully inform consumers about the type of data being collected
  • Obtain explicit consent from consumers to gather their data
  • Allow consumers to access their data and request corrections
  • Give consumers the option to withdraw their consent at any time

When it comes to gathering and using health data specifically, Patientory believes these actions are vital to maintaining trust between patients and providers. Today’s electronic medical records struggle with issues of interoperability and cybersecurity, and we need to reimagine the future of health information management. This is why we developed our distributed application: to empower individual consumers to easily manage and control access to their own health data. Join us.

Categories
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.

Categories
Patients

Did You Know Your Medical Data Fuels a Multi-Billion Dollar Industry?

In 2017, the legal buying, selling, and trading of our personal medical data comprised a $14 billion dollar industry; that number is expected to grow over $68 billion by 2025. Adam Tanner is the author of Our Bodies, Our Data: How Companies Make Billions Selling Our Medical Records. In an article for Time magazine, Tanner writes: “The growth of the big health data bazaar comes at a time that very few patients have access to their own comprehensive records for their own care, despite billions of dollars of U.S. government spending to encourage the adoption of electronic medical records.” You can find the full article here.  

Patients have a distinct lack of ownership when it comes to their own medical data. They are often asked to sign blanket consent forms that allow the practice of data trading when they are sick and potentially vulnerable. The buying and selling of medical data without explicit permission from the patient is technically allowed under HIPAA because the data is stripped of personally identifying characteristics, including names, Social Security numbers, and addresses. However, with today’s data mining technology and the vast amount of data available, the re-identification of anonymized data is only getting easier. Patientory believes it is time for patients to be put back in control of their own health information.

Categories
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.

Categories
Blockchain

Why Critical Healthcare Infrastructure Needs Blockchain: Thoughts on Cybersecurity from Patientory’s CEO

Hospital surgery emergency operating room surgical liquid drip equipment photo.

“The reality is that cyber-attacks have become significantly more sophisticated. Those who manage healthcare IT systems must start to seriously look at improving technologies used to protect the security of sensitive medical data and safeguard ongoing patient care.”

In an article on healthcare cybersecurity, Patientory CEO Chrissa McFarlane writes about the increase in cyber-attacks on healthcare organizations the past few years, the challenges faced by current healthcare IT systems, and the future of blockchain as a service to address these issues.

Blockchain is very difficult for hackers to breach for usable information. It can also be used to empower consumers to take control of their health data and securely share sensitive medical data. Read the full article here.