The Road To Real Personalized Health Is Through Data

By Claudia Williams, CEO of Manifest MedEx.

Claudia Williams

It still seems magical that Spotify creates a personalized music track for my life. Similarly, I now get personalized suggestions of what books to read, what recipes to cook, and even where to travel. This is the way we’re living our lives except for healthcare. It represents almost 20 percent of the U.S. economy and has a huge impact on my life, but I don’t have the ability to personalize my healthcare experience, personalize my medical treatments, or personalize how I’m treated as I move through the system.

What’s the missing piece? Data. We need to break data out of silos, exchange it, share it, leverage it, use it — all types of data — claims, clinical, new, and old. We can’t build personalized health without piecing together each patient’s individual experience to tell the full story. We cannot leverage the positive power of technology, including machine learning and AI, without data. Unlocking this information is difficult. But it’s critical work. And we need to democratize access to data, not treat it like a competitive asset, to bring the power of personalized medicine to every clinician and patient.

Data signals help patients personalize their choices

A nurse friend of mine has stage four breast cancer. Her clinicians gave her a treatment plan. But she took a close look at her health, her data, and the evidence and determined that in her particular case there was no evidence that the treatment options would extend her life, and they would probably cause her a lot of pain and suffering in the form of adverse effects. She decided not to get treatment and has lived a quite incredible life since then. Her doctors were surprised. But to her, it was simple — she didn’t want treatment because there was no evidence that it would work for her.

Data signals help care teams see the hidden patterns

We work with a care manager who follows up with patients after they have been in the hospital to help them get the care they need. Recently, she noticed a patient was getting treated at multiple emergency departments for falls. No one had noticed the pattern. But the care manager had access to the patient’s community health record from Manifest MedEx (MX) and could see the trend: The patient needed a walker. It did not take a huge amount of information or technology to deliver dramatically more effective and personalized care. It took data and someone to notice.

That’s the care we all want. We want healthcare that’s responsive to our needs, to our preferences, and to the simple things that make a difference.

You can’t personalize patient care without data 

Exciting technology is in the pipeline to make the vision of personalized medicine a reality, but we don’t have a reliable health data infrastructure in place to power this future. It’s like saying you’re going to create self-driving cars, but there’s no GPS network.

Ten years ago, most data in healthcare was trapped on paper. Now, most — but not all — of it is digital. It’s huge that in just a decade we’ve been able to transition from paper to electronic data. And we are also getting better at sharing it.

But if we don’t have platforms to integrate it, match it to each patient, and identify signal, the data is just more noise for overburdened clinicians. If we want a future of personalized health, we’re going to have to make meaning from data. And this meaning needs to be available to everyone treating a patient.

Manifest MedEx is creating the information backbone for personalized health

At MX we do the heavy lifting of bringing that data together. As California’s nonprofit health data network, our work is combining it, deduping it, cleaning it, matching it and then making the data signal available for the whole care team so they can actually improve healthcare.

To create a personalized care experience, every piece of patient data matters and needs to be accessible. For example, bringing together claims and clinical data, like we do at MX, can provide such powerful information. Sure, traditionally they serve different purposes, but when a provider has the advantage of every piece of the puzzle laid out in front of her — the patient’s complete history — that’s when a detailed story emerges and a personalized approach can be taken.

We’re democratizing access to life-saving data, so even the smallest provider or care manager can make care better for her patients. Today we share health records for 17 million Californians and about 400 organizations. We are on a mission to provide every healthcare organization in California with the information they need to improve care, enhance health, and lower costs.

We want personalized, we want tailored, and we want appropriate healthcare. The way to make that a reality for all patients is to unlock health data from silos and make it meaningful for patients and their care teams. That’s what we’re doing at MX.

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