Patient-Generated Data: A Boon or a Burden?

Just when providers thought there couldn’t possibly be more added to their plates, it looks like advances in consumer technology may be cooking yet another super-sized meal to digest.

Data, data, everywhere.

With the explosion of consumer-focused apps and devices, there’s more ability than ever for patients to track their every move—and send those reams of data to their often unsuspecting physicians. In fact, such patient engagements and interactions with electronic health records (EHRs) are built into Meaningful Use requirements. So, it’d make sense for providers to want these endless morsels from their patients’ minute-to-minute activities.  

But do they?

If you ask population health advocates, you’ll get a resounding “yes!” Accountable Care Organizations (ACOs) in the U.S. are on the rise due to initiatives within the Affordable Care Act, and many ACOs are viewing population health as within their realm of responsibility—“to provide preventative care for all their patients and care management for their patients with serious chronic diseases.”

In order to achieve this, a variety of factors beyond the 7-minute office visit must be taken into account—and it’d seem that having access to this information would give providers insight into the other variables which impact a patient’s health.

Is it a boon?

One physician with a focus on population health believes such information is essential. David Nash, MD, is founding dean of Thomas Jefferson University’s School of Population Health in Philadelphia. Recently, Nash spoke at the annual Allscripts Client Experience users’ meeting, and highlighted the need to focus on what he believes matters most: population health management.

Referring to the shift from the fee-for-service model to value-based payments, Nash said this represents a 

“complete cultural change. This is bringing a whole new science of population health…We’re going to need tools, all kinds of new tools. We need comparative data. We’re going to need the analytics behind it.”

Noting that the majority of what impacts a patient’s health status occurs outside the healthcare system loop, Nash says he wants more feedback on how patients take care of themselves in the routine of daily life— and that part of that effort is to engage patients across the entire care continuum.

Or is it a burden?

Enter mHealth, health and wellness apps, sensors and wearables, the Quantified Self movement and the catch-all bin: the Internet of Things. Here, we have patients generating information from a myriad of sources— creating a potential tsunami of unsolicited data that healthIT systems may not yet be equipped to handle.

The flood can potentially disrupt workflow, EHR usability, and even put physicians at risk. According to experts, providers could be held liable if they don’t review all information in the patient’s record—if this lack of review leads to misdiagnosis or other patient harm.

That’s one of the unsolicited-health-information-challenges identified by the Physician Practice Council of the American Health Information Management Association (AHIMA)—which led to AHIMA’s recently released practice brief that offers protocols to address the situation.

Noting the increased efforts to care for patients in the context of the entire continuum of care, AHIMA cites the fact that unsolicited patient information can be generated from a number of sources in addition to that which the patient submits—including health information exchanges (HIEs) and other providers. This creates the need for providers to address how to use, store and determine the value of unsolicited health information.

AHIMA’s recommendations for managing unsolicited information include the following general principles (see the brief for details):

• Develop policies regarding which unsolicited information will be retained, and the process for routing and disposition of unsolicited information that isn’t retained.
• Develop policies for the administrative aspects of receiving and processing unsolicited information.
• Review information received to determine if a patient-provider relationship exists and whether the information is required for treatment.
• Determine how unsolicited information received for a patient not associated with the provider will be processed.
• Create provider-defined protocols for processing unsolicited health information.
• Develop standardized indexing protocols for filing information in the EHR to allow ease of retrieval.
• Utilize a non-networked computer for viewing or printing, or enable software to assist in preventing harmful information from being uploaded.
• Provide education to all providers and staff on the steps that should be taken when they receive unsolicited health records.
• Consult a healthcare regulatory council when establishing protocols to address legal liability concerns.

According to the brief, providers have “no obligation to accept” unsolicited data—but if they do, they have to deal with it:

“Legal ramifications may occur if inadequate review of received unsolicited health information leads to ill-informed medical decisions or missed diagnoses. Providers that accept unsolicited information without completing a review may be held responsible for knowing the information is housed in their legal health record. In addition, there may not be legal precedents within that state to assist providers in establishing their policies and procedures regarding unsolicited health information. When developing a legal health record policy, providers should consult with healthcare regulatory counsel to address these liability concerns.”

Just when providers thought there couldn’t possibly be more added to their plates, it looks like advances in consumer technology may be cooking yet another super-sized meal to digest.

As with most things, the key to success begins with awareness—which is why physicians need to be acutely attuned to the flow of data pouring into patient records, and the responsibility they have for dealing with it. Advances on the consumer end enable nearly continuous data creation, but limitations of current EHR systems may impede the ability to cope with it.

Hopefully, progress in big data technologies will eventually ease the provider strain, so that patient-generated data can transform itself from being a burdensome beast—to the beneficial boon we’ve been hoping for.