The Road To Real Personalized Health Is Through Data
By Claudia Williams, CEO of Manifest MedEx.
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.