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Making Patient-Generated Health Data Work for Providers

An ONC-commissioned white paper identifies actions necessary for enabling providers to benefit from this patient-generated health data among other federal policy considerations.

Policy for patient-generated health data

Source: Thinkstock

By Kate Monica

The Office of the National Coordinator for Health Information Technology (ONC) released for public comment a new draft white paper developed by Accenture Federal Services focused on the opportunities and challenges of realizing the potential of patient-generated health data.

Of particular importance to healthcare organizations and providers is a series of enabling actions the federal policy needs to consider to help clinicians make use of patient-generated health data.

Specifically, the white paper advises that a policy framework encourage patients and caregivers to work together with clinicians and researchers and determine how procuring, using, and sharing patient generated health data (PGHD) can be an asset in managing patient health.

Federal policymakers are also encouraged to support active patient participation in assessing the functionality and practicality of devices, particularly through direct feedback to device manufacturers.

While PGHD can be largely beneficial to optimizing patient care, certain challenges may accompany the use and exchange of PGHD, the authors observe. Potential obstacles include the impact on clinical workflows, the management of patient expectations, the potential for increased liability, and the limited body of evidence for the clinical value of PGHD.

Most clinical workflows do not presently support PGHD, so clinicians are primarily left to use data collected during a patient visit.

One of the most significant advantages of PGHD is the ability to record data before and after patient visits to fill out an even fuller portrait of a patient’s medical history.

However, this large cache of data could overwhelm providers and affect their workflows. Incorporating PGHD into clinical care necessitates upfront investments and sufficient technical infrastructure to avoid leading to inaccurate or duplicate records could appear in a patient’s medical history, among other potential issues. According to the authors, a lack of guidance and best practices on how to accept, review, and integrate this data has led clinicians thus to view PGHD with skepticism.

To ameliorate these potential problems, the white paper has suggested a handful of enabling actions.

First, the policy framework should support the use of prioritized PGHD use cases in clinician’s workflows. The framework should ideally help clinicians identify use cases and PGHD data types that are most relevant, useful, and valuable to improving patient care and then encourage providers to develop standard practices for the use of PGHD. Incorporating PGHD into their workflows and using tools to analyze the data will further foster confidence among providers regarding the benefits of well-utilized PGHD.

According to the authors, the future framework should also encourage collaboration between clinicians and developers to advance technologies promoting efficient PGHD use. By recommending clinicians request technologies that optimize PGHD functionalities and allow efficient PGHD analysis, more developers of core clinical systems will prioritize and innovate these kinds of technologies.

Likewise, the authors call for a framework that identifies benefits, challenges, and best practices of PGHD use to highlight its clinical value and business case.

Lastly, the framework should promote the use of PGHD in supporting patient data donation for research purposes. The wealth of data made available by PGHD could be instrumental in a variety of studies, so clinicians should consider raising awareness about the potential benefits of donating data.

With these considerations in mind, future policy is expected to optimize PGHD and ease present concerns about the practicality of this kind of information.

“Technology — from consumer apps to medical-grade devices — has enabled patients to capture health data on their own,” said Jim Traficant, AFS Managing Director, Federal Health. “This draft white paper will help lay the groundwork for ONC to develop a policy framework for effectively and safely capturing, using and sharing PGHD to improve healthcare and research.”

The draft white paper also addresses a wide breadth of additional topics including opportunities, challenges, and enabling actions for policymakers, technology stakeholders, payers, and employers. 




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