Needle in a haystack: Providers find the value in patient-generated health data

Wearable devices and remote portals that gather health data directly from patients have become powerful tools for providers.

These technologies, which track measures such as blood pressure, activity level, weight and pain, enable health systems to obtain clearer views of their patients’ health. That’s why providers such as Mayo Clinic and Baptist Health made it a priority to collect data captured by patients outside of a clinical setting.

“What we’re realizing, especially in primary care, is the importance of all that additive data,” said Aaron Miri, senior vice president and chief digital and information officer at  Jacksonville, Florida-based Baptist Health. “These things are feeding into social determinants, which are really telling our clinicians how healthy a patient is.”

Baptist Health uses health data that patients generate on a case-by-case basis, typically in the oncology and cardiology departments, to manage chronic conditions outside the hospital, Miri said. The health system offers some patients take-home devices that store health data and monitor critical measures such as electrocardiogram readings.

Clinical integration of patient data

Health systems are engaged in trial and error to find the most effective and valuable ways to integrate patient-generated health data into clinical operations.

Organizing data from disparate sources in one place can help prevent medical errors and improve patient care, said Dr. Doug McKee, chief medical information officer at Rockledge, Florida-based Health First.

“The long-term vision is having a single source of truth where the patient’s data are integrated seamlessly—from wearables, from their day-to-day routines and from all of the providers they see—into a patient-centered record,” McKee said.

To do this successfully, providers have identified key elements: Patients need to be educated about how to collect the data; clinical staff and software developers must work in partnership; the right data points need to be determined; and regulations must be understood and followed. And data-recording technology can’t replace physicians’ medical judgment.

Clinicians accessing the data also need to evaluate its usefulness and accuracy to determine how to best use it to guide care and treatment decisions, said Miri, who is co-chair of the Health and Human Services Department’s Health Information Technology Advisory Committee.

Different sources of patient health data should be integrated into electronic health records and clinical workflows as much as possible while remaining available in a single system for easier clinician access, McKee said.

As a practicing family doctor, McKee said it isn’t useful to receive a bulky report with thousands of blood pressure readings because valuable information can get lost in the noise. Instead, using technology and artificial intelligence to identify the most critical data points can help to alleviate provider burnout and alert fatigue, he said.

Health systems and software companies need to work on organizing and displaying the data in ways that enable physicians to understand patients’ experiences, symptoms and other factors ahead of appointments, said Dr. Omar Lateef, president and CEO of Rush University Medical Center in Chicago.

“If all you have is a 30-minute visit to understand the complex nature of a person’s medical condition, you will absolutely miss so many of the details that characterize that condition,” Lateef said.

In April, Rochester, Minnesota-based Mayo Clinic launched Lucem Health, a platform that collects and curates data from remote patient devices and runs it through AI-enabled algorithms to generate diagnostic insights, said Dr. Steve Peters, the health system’s chief medical information officer. Lucem Health then integrates that information into clinical workflows.

Data that patients collect and submit can help providers appropriately triage people without unnecessary visits or evaluations and guide physicians in predicting outcomes and recommending therapies after surgical procedures, Peters said.

The healthcare IT landscape is fragmented and difficult to navigate, which can create barriers to care, said Jennifer Goldsmith, president and co-founder of Tendo Systems, a software company for patients and clinicians.

Patients have a dizzying array of consumer-facing applications to choose from—and for different purposes, ranging from managing conditions such as asthma and migraines to accessing portals for multiple providers. And health systems may use several EHRs for patients, connected to treatments they received from various departments, leading to multiple records and data profiles for the same patients.

Bits and pieces of information generated by individuals, as well as data from EHRs, can be buried in inaccessible systems and exist in an unstructured format that is difficult to translate and read.

“What this means is that patients and the clinicians operating that system don’t have a holistic view of the healthcare and medical background of the individual patient,” Goldsmith said.

Health systems first must harmonize and integrate patient information into a single place on their networks, she said. Then they need to consider how to standardize the data and ensure it adheres to industry norms so the information can be used across health systems.

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Technology and infrastructure

Patients can use Epic Systems’ MyChart, a health information portal, to access their full clinical records, schedule appointments, pay bills and interact with clinicians, said Sean Bina, vice president for patient experience at Epic. Remote patient monitoring devices from Apple Health and Google Fit along with products such as blood pressure cuffs, glucometers and scales can deliver data directly to MyChart, he said.

“We use data as an early monitoring and intervention system, to push education to patients, to recommend a video visit, and to activate clinicians in terms of follow-up,” Bina said.

The portal also enables patients to document their own health using standardized questionnaires on subjects such as mental wellness, medical, surgical and family histories, and pain management. This can help providers determine if interventions are needed, Bina said.

“We’re continuing to look at how do we get more intelligent about guiding patients and giving the right nudges at the right times, via the right communication channels, to help them build those habits that are going to improve their health,” said Trevor Berceau, product development lead at Epic. “The work we’re doing is all geared around making this as easy as possible for patients.”

By assisting clinical teams and patients with tracking changes over time, remote device data can reduce hospital readmissions for congestive heart failure patients and stabilize glucose levels in diabetes patients, Berceau said.

Many health systems face challenges integrating the data into clinical workflows and lack the appropriate technology infrastructure to capture, use and share data, said Brian Kalis, a managing director at Accenture, an IT and consulting company.

“You can get a large volume of data, but really you need that key insight at the right moment from that stream,” Kalis said.

Technology and health literacy, access to technology, and concerns about privacy and security among patients must be overcome, as well, Kalis said. Patients often don’t understand the value of generating their own data, he said.

To help health systems use patient data more easily, EHR vendors, integration platforms, technology platforms and digital health engagement platforms are building data ecosystems and ways to capture, use and share data from devices and apps, Kalis said.

Health systems recruiting employees to work on their EHRs and data-integration platforms are competing for talent with tech giants such as Amazon, Google and Tesla, Miri said. That includes full-stack developers, data analysts and informaticians, particularly those who have experience with clinical applications, he said.

These highly compensated professionals are vital to constructing systems that clinicians can use to deliver on the promise of patient-generated data, he said.

Healthcare executives increasingly see the importance of the digital frontier and more companies are spending 5% to 10% of their budgets on IT, including portals, apps and systems meant to collect patient data, Miri said.

Baptist Health spends 2% to 3% of its budget on patient-generated health data, Miri said. That spending is growing along with its greater investments in digital technology in general, he said. For instance, Baptist recently spent more than $200 million to upgrade its EHR into an integrated platform, he said.

Future of patient data

The medical industry has transformed relatively quickly in terms of technology, said Micky Tripathi, national coordinator for health information technology at HHS. The vast majority of hospitals and ambulatory care providers have certified EHRs in place, following more than $40 billion in private and public investments and commitments from vendors and providers over the past decade, he said.

The Health Insurance Portability and Accountability Act of 1996 requires providers to make health records available to patients, and the Centers for Medicare and Medicaid Services links payment incentives to complying with that rule.

Now the flow of information is beginning to go in the opposite direction, with patients providing data to physicians, Tripathi said.

Under HHS rules, every certified EHR must support the Fast Healthcare Interoperability Resources standard, which establishes formats and application programming interfaces for exchanging EHR data and allowing patient access, by the end of the year.

FHIR falls under Health Level Seven, a set of international standards for the transfer of clinical and administrative data between software applications that healthcare providers use, Tendo Systems’ Goldsmith said. These standards are meant to help organizations navigate interoperability and facilitate communication between EHRs and mobile apps.

The U.S. doesn’t have any regulations on the books specifically governing patient-generated health data, although various entities are developing guidelines for healthcare providers.