Data is More than Ones and Zeroes – It Can be Life or Death

When I was a practicing clinician caring for patients at Brigham and Women’s Hospital years ago, the data that I had to inform the most important decisions I made on behalf of my patients was the data I had in front of me at the time: symptoms, vital signs, and a health history that was shared verbally.

But there was so much more data that I wanted and didn’t have. What is this patient doing before and after this visit? Is this patient actually taking the medications I prescribe? Is he or she visiting a specialist for other conditions? Most of healthcare happens when the patient is not a patient...when they are leading their lives... and not in front of their doctor.

This was just the tip of the iceberg, in terms of the information gaps. The in-person visit gave me a snapshot of my patient, when what I really wanted was a movie. I wanted context and continuity when it came to the information I used to make decisions for my patients.

There’s a lot more talk about data today than there was back then. Digital health companies and their investors talk in almost reverent tones about its power to personalize and improve care. But unless you’ve been a practicing clinician, a lot of this talk sounds like the magical thinking we hear all too often in technology hubs like Silicon Valley or New York.

What is data, really, but a bunch of ones and zeroes, stored somewhere in the ether? What impact can it really have on my health or my life? These are likely common questions outside of tech company boardrooms and healthcare organizations.

Just like medicine, data is critical to health. It can mean the difference between life and death, between sickness and wellness. Thankfully, we’re living in a time when care decisions are informed by more data, which is coming to us from a variety of sources.

This is an innovation that will save lives -- but only if patients and providers demand access to this information.

A Data-Driven Doctor

I was always concerned about data, even when my role was caring for patients. Fearful that gaps in information could compromise my patients’ health outcomes--but lacking in technology to change things--I came up with workarounds.

If I had a patient who had an abnormal baseline EKG----I would ask them to keep a photocopy in their wallet and purse to show to a doctor if they ever ended up in an emergency room...a simple move like this could prevent them from getting all sorts of unnecessary and often invasive tests. Test results like these couldn’t be shared electronically, so hard copies were the best I could do.

I would sometimes order an Xray for a patient knowing full well that another physician might have already ordered a similar test recently, or that another doctor would order another Xray for this same patient in the near future. This kind of duplicated effort has been the norm for decades. I used to wish we could share test results like these easily, which would improve patient safety through reduced exposure to radiation, not to mention to cut waste.

I would have to take a leap of faith when prescribing medications. A lot of medicines can be harmful if a patient takes too much, or combines them with other medications. My only basis for making consequential decisions about dosage and schedules was whatever the patient told me. That wasn’t enough information to go on, and I was well aware of that at the time. But I didn’t have the means to get more reliable information, or to share my findings with other physicians.

Physicians today can access all kinds of information to help with important decisions. They don’t have to rely entirely on what patients tell them -- pharmacy claims, electronic health records and a range of other data also have a story to tell. It’s not that patients lie...sometimes they forget, sometimes they are embarrassed to mention that they could not afford the medication...or are having side-effects.

Much of this important data has traditionally been walled off from the physicians and patients who need it. But that is beginning to change.

Changing Times

A few months ago the government took a big step forward when it comes to the accessibility of the data that should be improving our healthcare system. You might have missed it if you’re not a healthcare policy fan, but it was monumental and will save lives. The Office of the National Coordinator for Health IT mandated that health plans--who are sitting on a great deal of the important, patient-level data--make this data accessible to any consumer who asks for it via advanced programming interfaces.

The spread of COVID-19 delayed the deadline for compliance, but this interoperability and sharing requirement is now the law, and health insurers will be required to turn over a range of data to consumers who demand it, and over time, to other insurers to whom members may move to.

Take this as doctor’s orders: You have the right to this data. Exercise it.

How to Use This Data to Improve Your Health

If you are a consumer, and you want to be able to hold and share with medical professionals your health history, start by going to your doctor and asking for a copy of your health record. Most medical offices use an electronic health record system that makes this possible. You can do the same with your health insurance provider, though your success in accessing your data--at least right now--is less assured.

Once in possession of your health records, there is the matter of storing it and managing it. This is an area that evolves as new technologies emerge, and The Carin Alliance is the place to learn more about how to own and use your personal data.

If you’re a doctor and you’re frustrated as I once was about the lack of free-flowing health information, don’t accept the status quo. Tell your patients about their rights to their data and show them how to get it.

I used to rely on patients to tell me everything I needed to know, which means there was plenty I never learned about. And I based very important treatment decisions on this information.

Physicians today access far more data as they make decisions, but it’s up to them and the patients they serve to demand it.