Can clinicians make full use of patient-generated data? 

EHR systems have the capacity to take data in and integrate it with clinical information, but questions surround its quality and clinicians’ capacity to use it. 

patient data

Healthcare organizations have increasing capacity to take in medical information and data from patients into their medical records systems, giving clinicians new opportunities and challenges in using it. Opportunities exist to use this information to improve patient care, but unless such patient-generated health data is organized and managed, it could remain unused or, worse, swamp already overburdened clinicians with too much information. 

“Pathways for data from devices or surveys to be brought securely into the EHR are increasing,”

Presenters at last week’s Informatics Summit, held by the American Medical Informatics Association in Chicago, focused on the capacity of records systems to ingest patient-generated health data (PGHD) and how it is already paying some benefits in isolated efforts to improve patient care. Medical devices – ranging from personally owned fitness monitors and watches, to connected medical scales and monitors – as well as patient-recorded data, notes and observations are viewed by many as providing a more well-rounded view of a patient’s condition outside of traditional healthcare encounters. However, questions remain about whether such data is valid and should be intermingled with clinician-based information in electronic health records systems. 

EHR systems can handle it 

There’s no question that some of the largest vendors of EHR systems can take in this data, noted Ryan Shaw, an associate professor at Duke University who conducted a survey of nine large ambulatory care EHR vendors about their systems’ capacity to integrate PGHD into their systems. Of those, six responded, representing 80 percent of the EHR systems in use in clinicians’ offices, Shaw says. 

Research found that there is limited implementation of tools to collect and use Patient Generated Health Data

Five of the six responding EHR vendors reported that their technology allows PGHD to be included in the medical data that clinicians can see. Follow-up interviews with these vendors found that the use of this data has risen over the past decade, with significant growth reported as healthcare organizations dealt with the COVID-19 pandemic. “Pathways for data from devices or surveys to be brought securely into the EHR are increasing,” Shaw says. In the interviews, “vendors discussed the lack of regulations and enforced standards around PGHD, and more supportive policies are needed.” 

From the provider side, healthcare organizations need organizational support for the inclusion of PGHD and readiness to use it in significant ways, Shaw notes as result of the vendor interviews. “There needs to be a plan across the system to use PGHD and there needs to be clinical champions pushing ways to use the data within care delivery models,” he says the research found. “You don’t just bring the data in – there needs to be a wraparound strategy.” 

Other critical success factors were found to be data governance, gaining assurances that PGHD is reliable, interoperability and a patient-focused approach. Organizations will need to commit resources to support clinical application and data processes, provide educational support for patients and providers, and undergird the ingestion with technical support, Shaw concludes. 

Outcomes data impacts care 

At the AMIA panel discussion, several instances of patient-reported medical information were detailed. For example, at Dana-Farber Cancer Institute, patient responses on the effectiveness of their care are being surveyed and incorporated into care pathways. Research has shown that the use of electronic patient-reported outcomes (ePRO) can improve quality of life, reduce utilization of visits to emergency departments and hospitalization, and prolong survival, says Jessica Cleveland, manager of informatics and analytics at the oncology-focused care organization. 

Dana-Farber has incorporated patient responses on outcomes over the last few years to assess clinical outcomes and quality measures, using approaches that integrate responses into its Epic electronic health records system. Patients now can report responses to care between clinical visits – they can do so through the Epic MyChart portal application or through the use of tablet computers at clinic sites, which is resulting in higher engagement, Cleveland reports. “There’s organizational support to build around these tools, which can amplify the patient voice for equity and improve the experience for patients,” she says. 

The use of ePRO also can be used to direct quality improvement efforts, drive population health management and be incorporated as part of alternative payment models. 

Clinician concern lingers 

Photo credit: Khuder Alaboud, University of Missouri-Columbia

The use of PGHD also holds potential to monitor conditions after discharge, says Khuder Alaboud, a graduate research assistant at the University of Missouri-Columbia. In research in association with the University of Missouri Health Care, Alaboud and other researchers looked at the ability of PGHD and related tools to improve follow-up care for ischemic heart disease, a condition that can be better managed when data collected between clinical visits can better inform ongoing management of the condition. 

[Care teams] agree that integrating and accessing PGHD collected from digital health tools can help to better manage patient care and aid in decision making.

The research found that there is limited implementation of tools to collect and use PGHD because of ongoing concern by clinicians with the reliability and accuracy of the data to support decision making and worries about the added workload for clinicians. The research at MU Health was limited in that it involved qualitative interviews with seven clinicians, but the responses were consistent and lined up with other similar research findings, Alaboud notes. 

Technology can alleviate some of these concerns, for example by taking readings from measurement devices and digital health tools and presenting the information in graphical form. Research participants agreed that integrating and accessing PGHD collected from digital health tools can help to better manage patient care and aid in decision making, but to reduce clinical workload, a smart alerting system would help clinicians manage the increase in data. 

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