Healthcare providers are no longer keepers of the data; here’s what that loss of control means and what to do about it.

Not so long ago patient data was the sole province of the provider. Sure patients could always request a copy of their records for their own use or for another provider’s use but even so, the information could only be found at a provider’s office. That’s where it lived—in a file, in one office…where the name on the door wasn’t the patient’s. It was locked away every night and available by day only to those who worked in that office.

It didn’t matter if that office belonged to a lab, a hospital or a physician. The fact remained that the information in those particular files could not be accessed by an outsider without that specific provider’s permission. 

There existed, in other words, very specific control over the data.

But providers are losing their protective grip on patient data now. And that loss of control is no small matter for providers and patients alike.

How providers are losing control of healthcare data

Take for example, IBM’s Watson in Healthcare. It’s hard at work pulling, parsing, analyzing, and delivering data to physicians worldwide. That’s generally a good thing. As is similar work produced by products from other vendors.

After all, medical data has grown to such an extent that the human mind simply can’t consume and process it all.  It doesn’t matter how smart any given doctor or provider is, there’s simply too much data to take in even if the provider did nothing but review data. Having a machine do it for you is a huge advancement and a considerable relief to overworked and short-staffed providers.

In order for Watson or any other computing system to work, the data has to be collected first. And that data comes, in large part, from providers. It comes from other sources too, of course, such as from years of medical journals and textbooks, clinical studies, lab archives, peer reviews, and you guessed it—EMRs and EHRs.  

But where does data in EMRs and EHRs come from? Providers of course. You see physicians and healthcare workers everywhere pecking away at keyboards and speaking into devices, constantly generating data. But that data does not stay in their possession.

What data goes around, comes around

Where does that data go? Thankfully the reward for entering all that data is that it comes back around in helpful analysis from the collective mind of big data.

“According to one expert, only 20 percent of the knowledge physicians use to make diagnosis and treatment decisions today is evidence based,” reads the IBM Watson in Healthcare webpage. “The result? One in five diagnoses are incorrect or incomplete and nearly 1.5 million medication errors are made in the US every year.”

Thus both providers and patients stand to gain substantially from the more thorough analyses and diagnoses that big data can deliver. Everyone readily realizes this of course, which is why we are all bothering to use big data in the first place.

But what many providers fail to understand about this movement is that the data does not stay within small circles in the medical community. Increasingly it is being democratized (available to all in medicine and research and at almost every level, whether traditional or nontraditional) and consumerized (available to and adapted by consumers). 

How healthcare data moves in and out of medical circles

Democratizing healthcare data, especially when such includes diagnoses, means more people can do doctoring than just doctors. We now routinely employ physician assistants and nurse practioners to lighten the physician load, for example, but that’s just the tip of the iceberg. Truly data-driven healthcare enables the broader use of more healthcare professionals in carrying the ever-increasing patient load—and to excellent effect.

But healthcare data consumerization will change even more. For example, Watson isn’t only using all that medical data to inform providers, it is also using that same data to inform consumers.

The IBM Watson Group announced recently that it made an investment in Pathway Genomics Corporation, a clinical laboratory that offers genetic testing services globally.  An IBM press release explains the mobile app the two will jointly develop this way:

“The new mobile app, Pathway Panorama, will be designed to call upon Watson’s unique ability to uncover insights from Big Data by understanding the complexities of human language, referencing millions of pages of healthcare data from medical journals and clinic trial data within seconds. The data will be combined with information about the individual’s lifestyle and wellness-related biomarker data to provide personalized options to help the user and their physician make informed decisions about living a healthier life. Panorama will also routinely monitor a user’s health and wellness information, and ping the user with any new relevant recommendations.

For example, a consumer will be able to ask the Pathway Panorama app questions based on their DNA, like ‘How much exercise should I do today?’ to ‘How much coffee can I drink on Monday?’ The cognitive app answers and provides options based on the millions of healthcare-related evidence-based data, provided by Pathway Genomics, ingested by Watson and on the individual’s biomarker, vital signs (wearables), DNA, electronic health records, and other information.”

Eventually it will do more than that for consumers. Much more.

This is a very big deal because it changes everything.

The impact you may not see coming

Some of the effects such apps will cause are fairly obvious, such as more personalized data and better communication between patients and healthcare providers, along with more accountability on both sides.

Other impacts are not so obvious. Like social media switched control from businesses to consumers, so too will cognitive healthcare apps move control from providers to patients. 

The consumerization of healthcare data will lead to patients being able to compare provider costs and results and select accordingly, yes. But it will also empower consumers to: 

- find and elect treatment choices beyond those that may be offered or recommended by any given provider;

- self-medicate in an educated way (by using data to determine which medicine and brand they want the provider to prescribe and the insurer to cover);

- review all performed procedures on their person for error-detection and other evaluations;

- and, yes, even for self-service operations via robotics one day. 

How then should providers prepare for such a future? A future where healthcare data is available to all and already cresting on the horizon?

The important thing to remember here is that while there is power in information, raw data is not information. Or at least it isn’t usable information, as there is far too much of it. It may not even be reliable information in many cases.

The true information, and thus the real power, is in the action taken after the analysis.

This means that you need more than statisticians, data scientists, software integrators, and app developers on your data science teams. You need talented strategists and gifted business analysts that can divine from the analysis strategic moves that best position your organization to thrive and prosper in a constantly changing business environment.

Attempts to resist or thwart healthcare data democratization and consumerization—to maintain provider control of the data, in other words—will fail miserably. The most you can hope for from this tactic is the very slightest of delays. Consumer and competitive pressures will force you to release your grip in short order.

The better course is to employ talented strategists to guide your organization forward. It doesn’t matter if your organization is for profit, a non-profit, or a government agency. Strategy is key to your organization’s continued viability. Find the talent you need and get them onboard as quickly as possible. Most importantly, listen closely to them when they come back to you with a plan.

Pam Baker is a regular nuviun contributor, the editor of FierceBigData and author of Data Divination: Big Data Strategies. For more expert insights from Pam, follow her on Twitter @bakercom1 and at FierceBigData.

The nuviun blog is intended to contribute to discussion and stimulate debate on important issues in global digital health. The views are solely those of the author.