Patient Reported Outcomes

How to Engage Patients and Collect Valuable Patient-Reported Data

Nearly half of the specialty societies that responded to a 2019 registry survey by the Council of Medical Specialty Societies reported they engage patients in their registry initiatives. [1]

This could all be changing – only continuing to grow – especially with the recent and significant transition of routine appointments to telemedicine visits. Keeping patients engaged in their health and invested in their outcomes has never been more important.

What Is Patient Engagement?

Patient engagement is defined as: Partnering with clinicians and the broader care team in exploring, decision making, and planning health care. Patients can also be engaged in the clinical system through research, registries, quality improvement, etc., which could be separate activities from health care decisions. [1]

Patient engagement enables two-way communication and information-sharing. These are crucial for achieving goal alignment and understanding. To put it simply, patient engagement:

• Simplifies conversations between a patient and their care team by having a timeline of personal and clinical events, health statistics, and highlighted changes over time.
• Enables two-way information sharing between the patient and physician on treatment and outcomes-related decisions and progress, as well as specialized patient education content.

How to Achieve Long-Term Patient Engagement and Gain Valuable Insights

Although many leading healthcare organizations and patient registries are incorporating patient-centered outcomes into quality measurement and improvement initiatives, gaining active participation from patients can be challenging, especially over the long term.

You can take four proactive steps to be successful in engaging patients and collecting patient-reported outcomes (PROs).

1. ‍Treat patients like consumers.
   At their core, patients and their families are consumers. Patients want to talk about the physical, mental, and emotional effects of the care they receive and their expectations for that digital health experience are based on the apps and technology they use every day. Whether it’s an Amazon review of a recent purchase, or a Yelp review of a take-out experience, apps have served to make consumers more comfortable and familiar with sharing their experiences. Why should a PRO survey be any different?
2. ‍Recognize the role of technology.
   Although engaging patients in their health and outcomes requires a broad and holistic view that extends beyond technology, technology plays a central role. It is important to ensure that the patient experience is multi-modal – meeting patients where they are at – whether that’s at home, or in line at the grocery store – and that the survey experience is designed to be simple and effective.
3. Deliver a tailored experience.
   Because patients are people of different ages, backgrounds, ethnicities and experiences, PRO tools should deliver tailored content that can be customized for these different user populations and might even employ gamification strategies to make surveys fun. This flexibility is perfectly suited for populations that have chronic conditions or rare diseases who may get surveyed more frequently than annually. These customizations can include different interface “skins” to engage younger audiences and question text written to specific reading levels.
4. Be creative and compelling.
   Beyond surveys, we give patients and families access to a shared decision-making platform for patients to use with their physician and care support network.

Our Longitudinal Patient Dashboard provides PRO survey responses back to patients and families. This puts the power of data in their hands and supports data-driven conversations. The reports we design and deliver for patients are meaningful to them. The dashboard highlights the effects of treatments and procedures on their mental, emotional, and physical health. The patients can visualize the data they have provided against other clinical factors.

We curate helpful resources for them specific to the information they have provided, just like in their PRO surveys, so they can review content any time. Finally, future enhancements include seeing their wearable or device data, and viewing that data graphed against their reported outcomes.

Improve Patient Engagement with Technology

Patient engagement should center around the principle that engaging patients in their health improves clinical outcomes and patient satisfaction, and ultimately drives high value healthcare. Research shows effective patient engagement improves clinical outcomes and patient satisfaction, and recent studies indicate more than 90% of patients expect to use digital tools to facilitate patient-provider interactions.

Our patient engagement and patient reported outcomes solutions:

• Acquire high-quality data from patients and caregivers in a secure and non-threatening way.
• Empower patients to make meaningful shared decisions with their care teams.
• Use technology to extend the relationship of patient and provider in between office visits.
• Create a transparent community data stream for patients to be connected to others like them.

by ArborAdmin

Patient-Reported Outcomes and Clinical Registries: The Basics

More and more clinical data registries are including the patient perspective with patient-reported outcomes (PROs). In a recent member survey of the Council for Medical Specialty Societies (CMSS): [1]

• 36% of the registries reported having engaged patients or patient groups.
• 24% of the registries reported having incorporated patient-reported outcomes into clinical registry data.

Those stats are according to “Engaging Patients in Clinical Registries,” a primer for organizations developing and advancing clinical data registries by the Council for Medical Specialty Societies.

CMSS states it well:

“As the use of registries expands and the health care system’s focus on meaningful measures and patient-centric care evolves, the impetus for broad stakeholder input, including that from patients and families, is also growing. Patients, families, and caregivers are now playing an essential role in helping to identify and prioritize aspects of care that are important to them.” [1]

We see a growing number of our own medical society and quality collaborative customers using patient-reported data in their registry programs. Registries use PRO data and measures to enhance or supplement other sources of data.

Before diving into the details of how to be successful with patient engagement and PROs, it is necessary to understand the importance of patient-provided information and how it can better inform true outcomes and performance.

What Is a Patient-Reported Outcome?

A patient-reported outcome (PRO) is "an outcome measure based on a report that comes directly from the patient (e.g., study subject) about the status of the patient’s health condition without amendment or interpretation of the patient’s response by a clinician or anyone else,” according to the National Health Council. [2]

Correctly collecting and measuring patient-sourced data can go a long way in demonstrating improvements and informing shared decision making.

Why Are Patient-Reported Outcomes Important?

When it comes to healthcare quality and outcomes, the patient voice informs the full picture, and fills in the “gaps” between care visits documented by their physician or specialists. PROs are the missing piece that complete the puzzle.

There are parts of the story that only the patient (or a family member or caregiver) can provide, like:

• Types of symptoms.
• Frequency of symptoms.
• Severity of symptoms.
• Nature and severity of disability.
• The impact of disease or condition on the daily life of the patient.
• Perception or feeling of the patient toward the disease or the treatment given.

These factors better inform physicians and care team members as they treat patients.
They can use medical assessments, tests, and their own expertise alongside patient-provided data to gain additional context and use it to deliver higher quality care.

Use Cases for Patient-Reported Outcomes

By optimizing data collection from patients and analyzing patient-reported outcome data, registries can add value to quality improvement and research, while also ensuring that patients can easily and discretely share their information.

The clinical registries we support use patient-reported outcomes to:

• Track outcomes, health, and well-being longitudinally.
• Support and improve shared decision making.
• Identify patients for registry-based research studies and clinical trials.
• Inform measures, develop guidelines, and calculate predictive analytics.

How to Collect Patient-Reported Outcomes

When effectively collected, tracked, and analyzed, patient-reported outcomes are a highly useful data source for making more informed decisions and improving the quality of care, treatments, therapies, and interventions. Healthcare analytics technology and clinical data registry software have made this process easier.

There are 3 steps involved:

1. Building and distributing patient surveys: Patient-reported outcomes surveys should collect the right data from the right person at the right time. Your PRO technology should give you the functionality and flexibility you need to securely and successfully distribute surveys to patients and caregivers anytime, anywhere.
2. Analyzing patient-reported outcomes data: Your registry should provide a single source of truth. Acquiring and blending PRO data with other data sources, and transforming it through advanced analytics, will get you the rich data asset you need for healthcare quality improvement and research.
3. Sharing and using patient-reported data: Patient-reported data has unlimited purpose. But it’s only as useful as you make it. As you design your program, ask yourself:

• How are we making answers and responses available to physicians and researchers?
• How are we sharing information back with patients?
• How are we combining patient data with other clinical data sources?
• Are we connecting patient-sourced data to physician performance?

Challenges with Patient-Reported Outcomes

There are a few common questions about PROs and patient engagement.

Is Patient-Reported Outcome Data Accurate?

A question we sometimes get is whether there is disagreement between the data collected by physicians in the care setting, and the outcomes reported by patients in the home setting. Would data collected across systems and care settings provide opposing results for the same patient?

Research shows a high correlation between patient-reported data and clinically documented chart abstracted data. This means data collected from patients is accurate and trustworthy. An article published in the Journal of the American Medical Association looked at this specific topic. Results were very positive in favor of the accuracy of patient-reported data. The data ranged from 80% to 90% in agreement. Our customers have done similar analysis on their data, and have found similar results.

How Do I Improve Patient Engagement?

Gaining active participation from patients in their health can be challenging, especially over the long term. Addressing this comes down to a few simple concepts.

1. Treating patients like consumers: Patients want to talk about how their health and emotions are impacted by experiences, and simple and intuitive technology can be used to capture this vital information.
2. Recognizing the role of technology: Tech plays a central role in PROs. The patient experience should be cutting edge and multi-modal, and the survey design experience should be simple and effective.
3. Using personas to guide the experience: Patients are people of different ages, backgrounds, ethnicities and experiences, so the PRO experience should be tailored in ways that attract and engage them.
4. Understanding that ongoing engagement needs creativity: Patients keep participating when they get something in return. This can be as simple as understanding how their data was used to benefit themselves and others like them. Or as complex as gamifying participation for both younger demographics and high-frequency surveyed populations.

When you use these principles in your PRO program and understand how to engage patients in their healthcare, your level of patient engagement and response rates will increase.

by ArborAdmin