Integrating PGHD Into EHR: A Summary Of The AHRQ Project

Integrating PGHD Into EHR

There is a growing source of health data working its way into mainstream clinical care: digital data generated by patients. Patient-generated health data (PGHD) includes data about their experience, current symptoms, vital signs, and ability to function and move that may be reported directly from the patient or indirectly as reported via medical or smart devices.

As a family physician and clinical informaticist, I can see the reticence of many physicians to embrace more data integrated with an already-overloaded electronic health record (EHR). I also see the incredible value of PGHD in focusing physician attention and supporting timely, data-driven decisions, particularly when data provide insights beyond the clinic or hospital and in a value-based care setting.

Overview: “Integrating Patient-Generated Health Data into Electronic Health Records in Ambulatory Care Settings”

A recent report from the Agency for Healthcare Research and Quality (AHRQ) provides practical direction to provider organizations on how to plan, implement, and support PGHD initiatives. The report is a comprehensive guide to the many steps involved with implementing patient data into ambulatory settings, including the design, launch, maintenance, and long-term sustainability of using and maximizing PGHD’s value to clinical care.  

AHRQ organized the report into six folios, which I’ve outlined the first five, adding context and suggestions to guide your initial steps. Part 2 covers the folio 6 and connects it to quality improvement, project management, and change management principles. Please reach out if you’d like to discuss your PGHD goals and challenges.

FOLIO 1: What is patient generated health data (PGHD) and why is it important?

The Office of the National Coordinator for Health Information Technology (ONC) defines PGHD as “health-related data created, recorded or gathered by or from patients (or family members or caregivers) to help address a health concern.” PGHD data can come from many sources such as surveys, health and treatment histories, social histories, patient-reported outcomes, and biometric devices. In addition to varied sources, PGHD can be collected from different settings and captured through various tools and devices; patient portals, digital health apps, external or implanted medical devices; and smart devices like smart watches, phones, or speakers.

What is the value of PGHD for provider organizations?

PGHD is important as studies show that PGHD increases patient engagement and satisfaction, creates a complete picture of patient health, helps manage chronic conditions with more timely and personalized interventions, and enables care plan adjustments between visits. Data reported in JAMIA, and presented at the 2017 HIMSS conference, demonstrated “that two-thirds of patients who provided PGHD as part of their clinical encounter felt more engaged.” In that same study, 90 percent of providers felt somewhat or strongly agreed that more could be done to use PGHD, with 61 percent of patients agreeing strongly.

PGHD offers clinicians key insights that are useful in creating more timely, personalized interventions. Like other data types, key factors like when, where, to whom, and what form the data takes influence how it’s consumed and used, integrated with the EHR, and influences decisions and conversations. 

Patient-reported data can also achieve four important goals:

• Inform providers on how patients are managing chronic disease.
• Provide motivation and accountability for patients.
• Notify a clinician when a patient’s risk increases or an exacerbation could trigger untoward events that require intervention. 
• Identify social determinants or other factors hindering patient self-management like care access, literacy, education, or support. 

PGHD value is dependent on accuracy and access

Yet, no matter the type of data, collection method, or source, it is critical that PGHD is actionable and available at the time of clinical decision making. Suppose the PGHD isn’t integrated into the electronic health record in a manner that is easily accessible and manipulatable to use in other decision-making and data visualization tools. In that case, its potential to inform clinical decision-making is significantly impacted. Likewise, the ability to visualize and share the results and interpretation with the patient helps avoid situations where patients feel their data isn’t being used to help them improve their health. 

FOLIO 2: Determine your organization’s and patient’s readiness to integrate and use PGHD

The use of PGHD has many positive impacts. However, integration of PGHD involves essential changes to operational workflow, teamwork, and care delivery similar to the integration of other health IT with the EHR or incorporating patient email and secure messaging. A readiness assessment can be a practical tool to identify stakeholder interest, current capabilities, potential barriers, and any staff concerns to address.  

A PGHD readiness assessment might include, but not be limited to:
•    Determine what types of data are being used or are desired (e.g., health and social history questionnaires, patient-submitted blood glucose levels, blood pressure readings, weight, and behavioral health assessments)
•    Inventory how PGHD is being used currently
•    Establish the current status of any PGHD integration initiatives
•    Denote which clinicians or conditions rely on PGHD already
•    Identify staff who have had experiences with PGHD implementation
•    Uncover why leaders want to increase the use of PGHD and how new data sources should make a measurable impact on outcomes
•    Determine available resources and training needs

In addition to assessing your organization's readiness, it’s critical to evaluate the readiness of your patients, who are the creators and owners of PGHD. Similar to the internal assessment, focus on identifying patient needs, resources, barriers, and concerns. However, pay particular attention to building trust and addressing data security or privacy concerns. 

The uptake of PGHD can be limited by digital health literacy, language or technical proficiencies, and Internet and smart device access. A patient readiness assessment can identify which conditions your patients are most likely to manage using PGHD.    

FOLIO 3: Assemble a change management team to oversee the PGHD program and its integration

Many members of the clinical team and support departments will be affected directly and indirectly by the integration of PGHD. It’s critical to identify early the stakeholders who can influence the success or failure of the project. 

Champions are also needed, including your executive sponsor, clinical and care staff; patients; employees from stakeholder departments like informatics, finance, or legal; your EHR representative; and community partner organizations. Potential clinical champions may be staff with a strong interest in using PGHD or employees already using tools and apps for their health. Potential patient champions could include those already sharing or asking to share their data with the clinical team. Patients living with a disease or condition being targeted as a use case for initial implementation should also be engaged. 

The new role of a PGHD coordinator is also crucial and often overlooked. It’s critical to long-term success because they support both patients and staff, provide project management support during implementation, write policies, design workflows, and organize staff training. Additionally, they can function as the point of contact for program or patient questions, as well as monitor and track rates of PGHD adoption, usage patterns, and outcomes. 

FOLIO 4: How to make the right PGHD and IT decisions for your organization

There are many types of PGHD and different ways to integrate the data with your EHR or other systems. Steps to choosing devices, constructing data governance, and providing identity and data security are paramount:
•    Consider compatibility with your EHR and functionality for visualizing PGHD
•    Consult with your EHR vendor to identify the best device options
•    Test sample devices (including both iPhone and Android) to compare quality, costs, usability, and functionality   
•    Ask if your EHR vendor furnishes PGHD kits for specific clinical conditions
•    Inquire with third-party vendors that may offer packages or facilitate integration

When evaluating different PGHD apps and devices, it is important to realize there are thousands of consumer health apps and only a few of these meet the FDA’s definition of a medical device. The majority are not FDA regulated and may not meet HIPAA compliance for security and privacy. 

Patient data privacy and security

Concerns about patient privacy and security surround PGHD and have unique vulnerabilities to plan for when integrating. These not only include data transmission but storage, third-party sharing, as well as identity and access management, and device provisioning/de-provisioning.   

Consider patient privacy issues like how PGHD integration might increase your EHR vulnerabilities to cyberattack. Consult your security and IT team before launching your readiness assessment. They can also help you identify third-party vendors where a business associate agreement might need updated or established. These agreements should include your vendor requirements to uphold HIPAA privacy and security practices. 

Working with these key stakeholders and advisors will ensure you have a legal, compliance, and security framework to govern the PGHD program amidst evolving federal, state, and private insurance policies; legal and compliance considerations; practice and provider medical insurance changes, and the nuances of patient consent. 

FOLIO 5: PGHD billing, reimbursement, and operational costs

The increasing adoption of digital healthcare, hospital at home, remote patient monitoring, and telehealth is driving reimbursement for PGHD. Medicare reimburses providers and care managers for collecting and interpreting PGHD in managing hypertension, diabetes, asthma, and other chronic diseases. In 2021, Medicare finalized reimbursement policies for remote physiological monitoring performed by physicians and non-physician providers. Medicaid reimbursement varies by state; 26 states reimburse for some form of remote patient monitoring.  

Private payers are beginning to cover remote monitoring to support care management. In particular, private payer risk-sharing and value-based payment models are considering incentives for the use of PGHD as indirect savings are a recognized benefit, decreasing in-office appointments and cancellations, increasing patient engagement, enabling greater patient self-management, and improved health outcomes. 

There are a variety of costs to identify when implementing a PGHD program, including EHR integration, third-party device vendors, data aggregator and analytics, staff training, new staff roles, and communication costs for promoting to patients and creating instructions. There are ongoing operational costs primarily around device maintenance, annual licensing, and software upgrades. 

PGHD and health equity

Patients who could most benefit from PGHD may need extra support. Knowing that inequities in care were magnified during the pandemic, it’s vital that providers approach PGHD integration with a prioritized awareness on equity lens, focusing on identifying patient barriers to adoption related to cost, health literacy, device availability, technical capabilities, as well as internet connectivity and speed. When implemented with equity as a prime concern, PGHD can help close the disparities gaps rather than widen the digital divide. 

Create an end-to-end PGHD strategy and implementation plan

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Learn more about RTI Health Advance's Digital Health Consulting and Solutions and connect with us. In our next article, read part 2 in this PGHD series that covers folio 6 and the final steps to creating or expanding a successful PGHD program.