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Department: Nursing Informatics

Evidence of improved outcomes using patient-generated health data

Erickson, Thomas J. MSBA, BS

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Nursing Management (Springhouse): June 2022 - Volume 53 - Issue 6 - p 12-15
doi: 10.1097/01.NUMA.0000831428.52191.5f
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Technology enthusiasts have embraced virtual care delivered via remote patient monitoring (RPM) for the past decade with an expectation that it will broadly transform the way healthcare is provided. This new care model will introduce a more consumer/patient-centric, prevention-focused care approach through the appropriate use of sensor-enabled technology. Driving adoption of virtual care into mainstream operations requires elevating the conversation from simply “tech talk” to engaging with leaders driven by a strong sense of practicality. These conversations require new value propositions and evidence that RPM improves outcomes without increasing staff burden.

RPM's proven value

In her November 2021 Nursing Management article, “Managing health with remote patient monitoring,” Joyce Sensmeier illuminated new practical, RPM-enabled opportunities for healthcare providers to work closely with patients to better manage and mitigate health concerns. She cited several studies demonstrating the value of RPM, such as significantly reducing hospital readmissions or effective monitoring of patients with COVID-19 after discharge. Sensmeier also highlighted concerns around safety, security, and accuracy of data. She concludes that future advances in RPM will depend on empirical evidence of improved outcomes or demonstrated efficacy.1

Hurdles to mainstream adoption

It's important to understand that while demonstrating improved outcomes and efficacy for RPM is essential, it's not sufficient to achieve mainstream adoption. Disconnects between reimbursement and coverage policies and regulatory policies impede widespread use of digital tools that would enable us to realize the benefits of digital connected care.2

With that acknowledgement, let's focus on the path to improved outcomes outlined here to provide an important step in overcoming these hurdles. We'll start by exploring patient-generated health data (PGHD) used in RPM programs.

Clinician-designed workflows needed

A recently published report from the US Department of Health and Human Services concluded, in part, that although there's a significant and growing interest in the practical application of PGHD, clinical workflows designed specifically for PGHD are needed to demonstrate value.3 PGHD refers to clinical information actively generated by the patient and captured through surveys, questionnaires, and biometrics using devices in the home, such as pulse oximeters, automated stethoscopes, and BP cuffs.

It's essential that clinicians design workflows and guide system developers on how to enable clinical applications to provide evidence of improved outcomes for the patient and care team. This team effort by clinicians and informaticists requires detailed mapping from workflows to use cases to technical requirements to implementation profiles and software.

In the case of PGHD, workflow design begins by assessing the clinician's information needs, followed by developing a method to process data deemed useful into information, and assembling that information in a way that provides decision-makers with the tools and context they need to have a full understanding of the patient situation.4

For example, Dr. Joe Humphry, former medical director and director of quality at La-na'i Community Health Center in Hawaii and a winner of the HIMSS Davies Award of Excellence, is designing a workflow that employs PGHD for self-measured BP (SMBP) to manage hypertension.5

As illustrated in Figure 1, the following steps outline the workflow from the clinician's perspective.

  • 1) The workflow starts with a discussion between the patient and care team to determine if SMBP is a good fit for the patient.
  • 2) The patient is educated on how to accurately gather SMBP data in the home.
  • 3) The patient gathers morning and evening BP readings for 3 to 7 days and transmits them via a smart phone, tablet, or dedicated hub to the provider team.
  • 4) The patient receives a report on their average resting BP, pulse rate evaluation, and any out-of-range readings.
  • 5) Together, the patient and care team review the results and determine the path forward.
Figure 1::
Simplified clinician workflow

It's important to understand that the collection and useful analysis of PGHD must support all of these steps for any of it to be practical for the patient and care team.

Use cases add real-world examples

Use cases are helpful in providing real-world examples of how processes are performed in both administrative and operational ways. A use case describes the stakeholders and actors, goals, triggers, and transactions that must occur for the workflow to be successful. In the above example about using SMBP to manage hypertension, clinicians use SMBP readings to assess the effects of antihypertensive treatments, including medication changes and lifestyle modifications. This activity involves a clinical team engaging with and educating the patient on obtaining multiple BP readings correctly, uploading and analyzing BP readings, and promoting shared decision-making regarding the recommended path forward.

The patient and family are active participants in hypertension management and ultimately responsible for maintaining a high standard in data collection. Vendors must also provide high-quality devices with structured data transmission and a user-friendly app to make data collection and transmission to the care team simple and secure. This list of stakeholders and actors is representative and not exhaustive of all people and transactions that must be included for the practical application of PGHD.

Acquiring PGHD and making it available to the care team via RPM is an essential element but by no means sufficient for success. To ensure that the acquisition and upload of PGHD properly supports their workflow, clinicians and their informaticist partners must remain engaged to accurately focus and prioritize the development of implementation guidance that will enable vendors to design devices and analytics software to the specific needs of the patient and the primary care team.

The role of industry standards

Clinicians welcome procedures and documentation that are the same when moving from one healthcare organization to another, saving them time otherwise spent understanding unique procedures or searching folders for one-of-a-kind documentation. Likewise, both clinicians and patients appreciate personal health records that are readily available, recognized, and accepted by all healthcare systems. A wide selection of devices that automatically and securely connect to any healthcare system empower patients to select devices that best meet their needs.

Industry standards for RPM are an essential step in this direction. However, to gain broad acceptance by industry, standards may include optional features that result in incompatibilities among “industry standard” devices. It's the uniform adoption and implementation of industry standards that ensure consistency in procedures, documentation, and device connectivity when clinicians and patients move from one healthcare system to another. Implementation profiles provide this uniformity.

Implementation profiles guide design

In the case of PGHD, implementation profiles guide the design of devices so they automatically connect to other devices or health information systems to facilitate the secure and seamless sharing of data. This uniformity allows any device to connect to any gateway and to any health information server giving users the freedom of your health, your data, your device, your choice.

There are two foundational profiles currently under development to realize this vision. One automatically connects PGHD with patient-reported outcomes. The other, although designed specifically to simplify the self-measurement of BP to manage hypertension, has broad application for the management of other chronic diseases.

Automatic linking provides clinically relevant data

Patient-reported outcome measures (PROMs) are key workflow tools to help clinicians monitor and manage patients' progress outside the traditional clinical setting while managing the cost of providing that care and reducing clinical burden. For example, a questionnaire measures a patient's perception related to the outcome of a procedure (such as hip surgery) or the benefit of treatment (such as hypertension management). PROMs may include general wellbeing, the degree to which a disease disrupts a patient's life, effects and adverse effects of medication, and interaction with the healthcare delivery system.

This profile proposes to automatically connect PGHD with PROMs to provide the right data at the right time so that it's clinically relevant. A key use case employs a questionnaire that includes measurement of patient vitals using one or more personal devices. These measurements are automatically inserted into the questionnaire response. It's important that this data be input in such a way that the context is provided to a clinician when reviewing the patient response to enhance interpretation.

Patient-generated health data profile

The Public Health Informatics Institute recently published a report listing a host of challenges to transferring and communicating PGHD.6 The report included recommendations to address these challenges by developing an implementation framework to support the movement of SMBP data.

The patient-generated health data profile is a technical specification under development by the standards profiling organization, IHE International. It will provide PGHD to clinician-designed workflows that enable a patient at home to measure their BP as required by the primary care team. Adoption of this specification will facilitate shared decision-making between the patient and care team to treat hypertension while providing evidence of improved outcomes without increasing staff burden.

Advantages of implementation software

Profiles enable the uniform implementation of industry standards to enable any device to exchange information automatically and securely with any other device or health record system. However, the complexities of the standards and profiles require a significant investment for the vendor to maintain the necessary expertise to digest and implement the profiles.

Instead, software libraries that already include these standards and profiles can be downloaded and installed, which dramatically reduces the time and cost to design profiles into devices. It also enables large and small companies all around the globe to manufacture a broad offering of more affordable devices. This gives the patient freedom of choice and healthcare systems the comfort of knowing that whatever device comes through the door, it will automatically connect to their own information system. More important, the healthcare system will have confidence in the data and analysis from these devices to support clinical decisions.

Embracing a collaborative approach

Clinicians, informaticists, and device vendors need to work together to help demonstrate the efficacy of PGHD. Delivering on the promise of improved outcomes using PGHD starts with the clinician clearly articulating the desired outcomes, designing the workflow to demonstrate those outcomes, and using success criteria to provide the evidence necessary to realize its promise, thereby bringing PGHD into widespread use. Embracing a collaborative approach will more rapidly advance shared decision-making, while keeping the patient at the center.


1. Sensmeier J. Managing health with remote patient monitoring. Nurs Manage. 2021;52(11):13–17
2. Hoffman J. Digital connected care: beyond the tech – policy hurdles for remote patient monitoring, HIMSS Resource Center. 2022.
3. Shaw RJ, Boazak M, Tiase V, et al. Integrating Patient-generated Digital Health Data into Electronic Health Records in Ambulatory Care Settings: An Environmental Scan. AHRQ Publication No. 21-0031. Rockville, MD: Agency for Healthcare Research and Quality; 2021.
4. Tiase V. Digital connected care: translating data into knowledge. HIMSS Resource Center. 2021.
5. HIMSS. Improving community health outcomes through telehealth. HIMSS Resource Center. 2018.
6. Public Health Informatics Institute: Self-measured blood pressure monitoring. 2021.
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