Gaining Control of Your Healthcare Data

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By Birju Shah and Nick Jordan 

In a world where technology and Big Data can provide us with instantaneous access to our banking transactions, and our financial information and credit reports can be retrieved with a few keystrokes when applying for a mortgage — trying to get access to our own healthcare data is exasperating.  Beyond exasperating, is the frightening situation when the inability to access up-to-date and accurate information, can result in an aggravated medical condition or even death.

Before the pandemic, patients and their families or caregivers have had to struggle to get access to their medical history and go through countless machinations to share their records with other medical providers. With COVID, what was already a significant problem, has become a monumental issue as healthcare organizations race to share the information they are gathering about the virus.

Patients need access to their healthcare data so they can learn their risks if they become infected – do they have comorbidities that could cause breathing or cardiovascular problems for example –or as vaccines become available, what in their records indicate that they are eligible to apply for the earliest groupings for vaccination.

COVID has exposed the dire need for a better system of healthcare data sharing. As we inch our way towards a post-COVID society, we can no longer accept the mediocrity, disinformation, and ineptness that has plagued patient healthcare data to date or ignore its vital importance in helping save lives. Individuals need easy access to all of their health records and they need to be able to control how it is shared.

Real-Time Access to Data

Patients want access to their healthcare records in much the same way as they conduct banking transactions, and they want control over who can see and use the data. While one medical facility may have an online portal that tracks visits, medications, and test results, it won’t have patient healthcare data from another facility. Maybe a patient wants to share their data about their cancer or diabetes care with a research center. It could even be something as simple as sharing their diagnosis with marketing agencies so the patient can find better deals on the products they need. Because it is the patient’s data, they should have ownership of it all regardless of provider and be the one who determines who can access that information and how it can be shared.

Patients who opt-in to share their healthcare data could facilitate research and free companies to work with others in the industry. Innovative new products and care techniques could be readily shared with patients who want to be informed, as well as allow better collaboration between health providers, medical manufacturers, and even insurance companies.

Real-Time Offers Freedom

Offering a one-stop portal or app for patient information would allow for real-time data access. No more waiting days for test results or playing email tag with doctors. COVID vaccinations are an example of putting real-time data sharing into action. When someone gets their COVID vaccine, that information can be put directly into the person’s patient database and immediately added to records available not only to the primary care doctor but also accessed by the patient to present that data at work or at the airport in order to board a plane. This kind of accessibility unlocks the patient’s freedom to do what they want based on the ability to provide instant proof of any part of their health records.

But What Exactly is Patient Data?

Patient data used to be defined asidentifiable information, health statistics, and health events, but in this day and age, patient data is so much more than that.  It’s a patient’s Apple watch, weight scale, connected glucose monitor, any remote patient system, it could even be Alexa or a patient’s spend data. Healthcare is really split up into three worlds, reactionary, predictive, and disease.  Reactionary healthcare is when an event happens, and a person has to see a doctor, and when data is needed in real-time.  Predictive or preventative healthcare is usually focused on chronic diseases and in this scenario, the data that is needed typically requires a lot of different providers coming together to collaboratively manage a patient’s care.  With healthcare management of a disease, whether cancer or some other event that requires treatment over time, active awareness and alerts of a patient’s healthcare data is critical in making sure a negative event won’t happen.

Healthcare data is much more complex these days and wearable computers, quantified self initiatives pioneered at MIT are in use to help manage patient care, but we still don’t have the best solutions for a trusted medical network to access necessary data in real-time and in a flat way.

Interoperability of Healthcare

Providers and payers are currently the mediators of a patient’s data. And that data resides in a hodgepodge of archaic forms: pen, paper, fax, and mailing statements. Some providers and payers have adopted log-ins, but are still challenged by the simple task of downloading a PDF and emailing that to another doctor, as the other facility requires that it be faxed. Trying to coordinate the information between healthcare systems or even product to product companies, for example, if a patient has a Dexcom CGM (Continuous Glucose Monitoring) and switches to Medtronic’s CGM because their insurance reimbursement changes as a result of their having a new employer, is impossible since none of their healthcare data is transferred. The key is to make healthcare data interoperable, allow patients to have control of their data, and do it in a safe, accountable, and transparent way.

How Blockchain Fits in Health Data Records

The need for easily accessible personal healthcare databases is clear. How to create this system effectively and efficiently is the biggest obstacle. The solution may be found in blockchain. The National Institutes of Health (NIH) has conducted research to address the problem of Electronic Health Records (EHR) held across multiple disconnected systems and come up with ways to connect them.

“Individual patients are identified by unique certificates issued by local certificate authorities that collaborate with each other in a channel of the network,” the research states. “The results demonstrated that our system can be used by doctors to find patient’s records and verify patient’s consent on access to the data. Patients also can seamlessly receive their past records from other hospitals.”

While this is progress toward a more universal database, it doesn’t address the need for a database designed specifically for patient use or to give them control over how their personal healthcare data is used. The goal is to have a system where the patient can give permission to what can be shared and who it can be shared with upfront, reducing or even eliminating the friction we currently see in healthcare data access making for a more repeatable ecosystem that flattens the sharing of healthcare data for the good of the patient. Rather than taking days or weeks for information to be shared, everything can be done in real-time. Imagine a cancer patient that would like to share their data with Johnson & Johnson in helping make a new cancer drug, being able to monetize their data if that drug is successful. This is the kind of real-time data sharing — based on patient consent — that could help accelerate medical advancement and patient remuneration at the same time helping create a win-win.

In pre-COVID times, patients accepted the frustration that came with access to their healthcare data as par for the course. This can no longer be acceptable. When it comes to healthcare data, patients must be able to access all their own information in real-time and have the control to share it with whom they want.  We have the technology and we have the Big Data – let’s get it done. Lives are at stake.

About the Authors

Birju Shah is currently head of product for Uber Health & Communities, previously running the AI group. His past experiences working in life sciences led him to work with world-renowned scientists, regulators, biologists, chemists, doctors, and epidemiologists. Birju has leveraged advanced technology to provide tools and platforms to accelerate the innovation of diagnostics, therapeutics, and health services that can flatten the complex friction of the healthcare supply chain. The author can be contacted on LinkedIn.

Nick Jordan is the CEO of Narrative.io, an enterprise data streaming platform company. Nick founded Narrative in 2016 after spending nearly a decade in data-related product management roles including Yahoo!, Demdex (acquired by Adobe), and Tapad (acquired by Telenor). The author can be contacted on LinkedIn.

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