There's no patient-centered care without patient-centered data

The problem

We are on the precipice of a data tidal wave in health care, which is exciting because it can transform lives. But it’s concerning because our health care system is not built to deliver this promise.

We are funneling data into an abyss of fragmented medical care. We will be left with fragmented data hidden behind account logins of thousands of devices and health care organization accounts.

Already today, patients and providers struggle to access lab work, imaging, medication and a variety of tests and patient information. The struggle increases exponentially as our sources of data grow. Beyond the inconvenience, the scattered data prevents a comprehensive view of patient information. This makes data even more ineffective, results in second-rate care and opens the door to preventable mistakes. We have reached the end of the line with a makeshift approach to care. To truly improve quality and reduce cost of medical care, we must embrace making data patient-centered. With that as our source of truth, we can untangle this problem. We can truly unleash the transforming impact modern-day medicine can have to change people’s lives. Below, we’ve outlined some ideas on how this can work.

The landscape today

Fragmented health care today creates a great burden on patients and providers. They spend unnecessary time tracking down important, scattered medical data. X-rays are in one account; their blood work is another, and their insurance information is yet another.

Still, medical device companies, EHRs and medical organizations continue to view the sharing of patient data as a risk to their business rather than a way to improve care. The long-term health care needs of patients are sacrificed for the short-term need to meet quarterly and yearly goals.

Silos are further reinforced, and patient care becomes even more fragmented. The government is making efforts to force the sharing of information. Even if successful, the culture of using information for business rather than clinical purposes continues. This current landscape requires a completely new way of thinking.

Why this is a problem?

This is a problem for two reasons:

First, siloed data points are not as valuable as data quickly and efficiently viewed altogether. For example, getting a view of someone’s blood pressure, blood sugar and abnormal EKG altogether is more helpful than just blood pressure alone. It leads to better treatment recommendations.

Second, creating the infrastructure necessary to tie together and manage fragmented, siloed data is costly and complex. It’s not the right way to build technology. It becomes vulnerable to breaking and security breaches. We would potentially spend more time and energy on this infrastructure than on actual patient care.

The path forward

The only way forward is to create structural change in the way we handle information. It is a massive change. It is a course correction that must be made now to move us out of the health care paralysis we live in. This change revolves around making data patient-centered. Much like Netflix changed the landscape for how we watch things or Amazon for how we shop, there must be a change in how we deliver and consume information in health care.

How do we do this:

Make sure all projects that create data always include a process to ensure that data can easily be shared or exported.
Patient questions about data or records should always include an easy way to share or export that data to a patient account.
Work with like-minded companies who share data with you.
Select technology solutions that share and accumulate data in a patient-centric way.
Reinforce the idea that being open with data can mean being successful both clinically and financially.
Give your patients open access and the ability to pull and push their data anywhere they need, independently.
Give your providers open access and the ability to quickly and easily add or share data with their patients and other organizations they ask to share with.
Ensure 3rd party vendors, technology or devices you use have systems in place that can move data in automated, patient-centric ways.
Eliminate language in health care vendor agreements that disallows the sharing of data or that mandates that data is owned by one entity at the expense of the other

Most importantly, we must change the organizational culture around health care data. It must not focus on hoarding and fighting over data. Let’s start competing to see who can do the most with the data when everyone has access to all of it. It will be not just good for your business, but it’s also the right thing to do. Imagine what we could accomplish if we work together.

Samant Virk is a neurologist and health care executive.