Patient-Generated Health Data

Over the past several years, patient engagement has been a growing focus in healthcare. Spurred by its inclusion within Meaningful Use criteria, the need for hospitals and physician practices to strengthen patient relationships through patient engagement and portal utilization is at the front, center and top of the minds of senior executives.

Even the Institute for Healthcare Improvement (IHI) alludes to the need for stronger patient engagement as a stepping stone to achieving the Triple Aim framework: improve patient experience, improve population health, and reduce the per capita cost of healthcare.

The good news is that new mobile monitoring apps and wearable fitness gear seem to be taking this concept to an entirely new level in which patients-often dubbed “consumers”-are playing a more active role in their own health. Consumers are able to count calories, monitor their heart rate, count their steps, measure their sleep, track their diabetes HbA1c levels, and more with apps and devices such as MyFitnessPal, Apple’s HealthKit, Fitbit, and others.

As portable technology continues to enhance the capture of patient-generated health data (PGHD), HIM professionals must ask themselves this important question: What is the value of this data, and how can it be incorporated into the EHR to form a more holistic view of one’s health?

Setting the Stage for Engagement defines PGHD as data that is “created, recorded, or gathered by or from patients (or family members or other caregivers) to help address a health concern.” PGHD is not a new concept. Patients have always provided health information to physicians; however, this data is increasingly collected in an electronic format and at a much faster frequency. This raises questions about how the information can be used in the clinical setting. The primary advantage of PGHD is that it provides important information about patients’ health between medical visits. It gives providers insight into patients’ health on an ongoing basis rather than at a particular snapshot in time, making it easier to spot trends and monitor chronic conditions. PGHD also plays an important role in Meaningful Use.

PGHD and Meaningful Use
According to the draft recommendations for Meaningful Use Stage 3, patients must have the ability to electronically submit PGHD “through structured or semi-structured questionnaires (e.g., screening questionnaires, intake forms, risk assessment, functional status) for more than 10 percent of all unique patients.” The Healthcare Information and Management Systems Society (HIMSS) published a Patient Engagement Framework that aligns PGHD with Meaningful Use Stages 2 and 3. This data includes care experience surveys, symptom assessments, self-management diaries, home monitoring devices, questionnaires, and more.

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There’s No Going Back
Clearly, PGHD is here to stay, and it will only continue to increase commensurate with technology. In a recent Pew Research Report, seven out of 10 U.S. adults said that they track at least one health indicator for themselves or a loved one. Patients are buying into the concept, and the government is encouraging it. The next step is for HIM professionals to embrace it and take steps to integrate it in a way that maintains integrity, privacy, and security.

Four Important Roles for HIM
In many ways, PGHD is no different from any other type of data that an organization maintains and manages. HIM professionals understand the importance of information governance and integrity and must serve as stalwart stewards for all data, including PGHD.

Following are four ways in which HIM professionals can play an active role in the integration and management of PGHD:

1. Contact your EHR vendor to begin conversations about PGHD.
PGHD may emanate primarily from the patient portal as patients input health histories, allergies, and medications or even as they engage in secure messaging with providers. It’s important to understand how this information may flow into the EHR by asking the following six questions of both your organization and your IT vendors.

Will PGHD become part of the designated record set and be used for treatment? If so, how?

If your organization chooses to maintain PGHD, it will automatically become part of your legal health record. This is true regardless of whether PGHD is used for clinical care. What are the legal and liability ramifications of including PGHD in your legal health record? How can it be monitored and stored?

How can you distinguish PGHD from provider-generated data? Organizations must be able to track and verify the origin of all information, including its author and any changes that are made subsequently-preferably down to the data element level.

” Patient generated health data can be used to improve patient health and organizational engagement.”

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How can you establish a process for identifying the accuracy of PGHD? Can providers make critical decisions based on the information that patients provide? This depends largely on the method of capture.

For example, an FDA-regulated heart monitoring device may be more accurate than a phone application. However, it’s also best practice to review PGHD before pushing it into the EHR. Many organizations download PGHD to an intermediate system (e.g., a separate work queue in the EHR) where a technician, scribe, or nurse reviews it to determine whether it’s clinically relevant and whether any immediate action is necessary.

Can the EHR include PGHD alerts? For example, how will providers be notified when PGHD is ready for their review? Likewise, when patients submit PGHD, can they assign a priority level to that information (e.g., low, medium, or high)?

How can you ensure the privacy and security of PGHD? All health information, including PGHD, is subject to state and federal regulations regarding privacy and security. How can compliance be ensured when PGHD often flows from different external sources and at different rates?

After discussing and answering the six questions above, the next step is to develop policies and procedures related to PGHD. HIM professionals and information governance teams should take an active role in policy development and subsequent implementation, monitoring, and enforcement.

2. Establish policies and procedures to address PGHD. Be sure to address the following points:

  • Type of PGHD that the organization will collect and allow
  • How the organization will use the PGHD-that is, whether it will be used for clinical decision-making or simply become part of the legal health record and not used for active clinical care
  • Assignment of who will review PGHD prior to incorporating it into the patient record
  • Timeframe in which PGHD will be reviewed (i.e., how soon after patients submit the information)
  • Timeframe and type of response that patients will receive after submitting PGHD-Note that patients may expect an immediate response, so it’s important to manage these expectations and educate patients about the process
  • Method for distinguishing PGHD from other data in the health record (e.g., data provenance)
  • Process for alerting providers when PGHD is ready for their review
  • Detailed process for ensuring privacy and security of PGHD

3. Educate providers about the importance of PGHD. Provider buy-in is a critical part of PGHD integration. HIM professionals can help explain the benefit and relevancy of PGHD in the practice, clinic, hospital, and other ancillary settings.

4. Educate patients about the impact of PGHD. Patients are collecting PGHD, but do they truly understand its implications, particularly if that data is integrated with the EHR? For example, educate patients about the importance of not sharing wearable devices or inputting false data into an application (e.g., lying about one’s glucose levels). Providers may eventually make clinical decisions based on this data, and the information must be accurate.

Think ‘Collaboration’
When it comes to PGHD, there are many unknowns. Patient wearable technology is rapidly evolving and as it does, hospitals and physician practices must continually research its capabilities, risks, and rewards. The role of an HIM professional is to raise some of the most important questions. Work collaboratively with IT, your EHR vendor, clinicians, and patients to establish a strategic information governance framework and identify how PGHD can be used to improve patient health and organizational engagement.

Alisha R. Smith is the Health Information Management Compliance Educator for HealthPort Corporation in Alpharetta, Ga.

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