How HIEs are Improving Healthcare with Patient-Generated Data

The following is a guest article by Andrea Tait, VP of Client Value, Orion Health.

Patient-Generated Data’s Place in Patient Care
Today, health systems have increasingly recognized the need to be patient-centered, with a focus on empowering and engaging patients to assist them in maintaining their own health. Through the right approach in using patient self-generated data, health systems can achieve improvements in patient’s quality of life and their population’s healthcare outcomes.

As a concept, patient-generated health data (PGHD) is increasingly realized as important and a “hot topic,” though there is little guidance from implementers or academics regarding best practices and how much benefit can be expected from this approach.

The challenge with incorporating PGHD stems from the need to use other tools like artificial intelligence (AI) to assist patients in posting the most relevant data for their care team and to assist clinicians in triaging urgent information and leveraging information like social determinants of health (SDOH) or patient reported symptoms to understand the patient’s unique perspectives within the context of the full medical record.

A good example of PGHD being used in clinics is a patient symptom diary. Using a smart phone application to make a symptom diary electronic can reduce the clinician workload as patients capture the data themselves. Common applications include diabetes self-management apps, migraine diaries, menstrual diaries and so on.

Of course, it is not a perfect world and understanding the best way to include patient perspectives into the clinical decision-making process is evolving rapidly. Technology adds significant value here by enabling patient participation. The challenge for technologists is how best to enable significant patient participation and support patients emerging as an actor in the clinical record in ways that have only very recently been tested.

PGHD has the potential to enhance patient engagement, support patient-provider interactions and reduce information gaps. Electronic PGHD may facilitate better communication between patients and their care providers by truly making patients and their families a part of their own care team.

HIEs – Integrating Data from Multiple Sources in Meaningful Ways for Clinicians
In the world of health information exchanges (HIEs), integrating data from multiple sources and presenting data to the clinician in a way that is easy to understand and take action upon is key. HIEs have evolved into essential tools that give clinicians more complete information about a patient. Recently, the ability to integrate claims data has added insights and filled in gaps in the patient record. For example, medication claims give a better understanding of a patient’s most recent prescription.

HIEs are expanding to include SDOH data, which helps clinicians and patients consider the socioeconomic factors that are enormously significant in their health outcomes, such as profession, address and income. Other data, such as genomics and environmental data are in the very early stages of integration with the HIE, though expectations are high.

Patient-Generated Data and HIEs
The challenge of managing an increasing amount of information for each patient is well documented and is a significant contributor to clinician fatigue. PGHD and HIEs should be assessed through the lens of integrating additional data with unique attributes and value that add to the patient’s healthcare without adding to the healthcare provider workload.

It is clear there are tremendous opportunities regarding patient-generated data:
• Improved visibility by both patients and their care teams into treatment plan adherence
• Improved ability to use this information to help personalize patient treatment/care plans
• Improved ability for patients to participate in their own care by updating their care teams on symptoms, events, etc. in real-time

Perspectives from HIEs
HIEs want to make greater use of the data they collect. They rely on external sources to provide thought leadership, guidance and lessons about topics like the effective use of PGHD and how best to prioritize and use data to provide better, more timely care.

HIEs are most interested in PGHD when:
• The data is being captured as part of an adherence/monitoring program to ensure that it is uploaded consistently and includes context
• A clear governance process is in place around data use, especially in relation to direct clinical care
• Dedicated direct remote monitoring plans can help patients answer specific questions
• Data is available to the patient and their families, as well as clinicians

Remote Patient Monitoring and HIEs
Remote patient monitoring (RPM) solutions prompt patients with specific questions every day to gather data. This form of patient-generated data is very structured and is designed to be of value to both patients and their clinical teams as the data can be easily integrated with the rest of the HIE.

Combining structured data capture from the patient and relevant device data along with automated alerts that reduce the need for actual clinician input reduces clinician effort and provides relevant data in the context of the larger clinical record contained in the HIE. A successful example of this is the inclusion of readings from blood glucose machines into patient portals and HIEs.

The Provider Perspective
To integrate PGHD properly, providers need to integrate the evaluation of PGHD into their regular clinical workflow. One model is for them to evaluate all new PGHD and select those elements that need to be part of the clinical record while leaving the remainder in the patient portal record. Payers need to consider the time spent by clinicians reviewing electronic PGHD and how best to reflect this in clinician compensation. Providers may be concerned about increased liability and accountability and setting realistic patient expectations.

It is important that tools like AI are in place so that providers are immediately aware of critical information whenever a patient uploads it. At the same time, providers do not need to be notified of every piece of non-critical data that is uploaded.

Patients cannot be expected to always understand the relative importance of data (for example, the number of steps per day on a Fitbit is unlikely to be of much clinical value) and do not have the ability to use it easily and correctly.

Another issue is that even the most motivated patients are not always consistently uploading their data. Gaps arise because patients are human and get bored, or their conditions improve and they do not see the need to keep posting.

Any tool that automates basic predictable responses to patient queries reduces the load on clinicians and enables them to focus on the critical decisions where their expertise is of most value.

Conclusions and Recommendations
The Remote Patient Management Approach of adding more structured data presents the best opportunity to balance a patient’s desire and capability to contribute data toward their clinical care with the physician’s need for an organized approach that flags clinically valuable data but allows patients to view the overall record. Combining structured data captured from the patient with relevant device data, along with automated alerts that assist clinicians in focusing primarily on the most actionable information, will reduce clinician effort. Studies consistently show the Remote Patient Model increases patients’ reported quality of life while decreasing interventions like emergency department admissions. As always, the balance of data and tools to assist clinicians, patients and their families in using that information effectively, will be the key.