What You Can Learn from Registries with Solid Patient-Reported Outcomes Programs

What You Can Learn from Registries with Solid Patient-Reported Outcomes Programs

What You Can Learn from Registries with Solid Patient-Reported Outcomes Programs

Can you hear it? The patient voice is getting louder.

Healthcare organizations are increasingly using patient reported outcome surveys to gather information about health status, symptoms, and patient-centered outcomes that take place in between visits and outside of a physician’s scope of access.

The data collected not only makes patient records more complete and accurate for the research initiatives of the sponsoring organization, but also encourages:

  • Shared decision making.
  • Family engagement.
  • Longitudinal patient engagement at scale.

Let’s look at examples of how three registries are using patient-reported outcomes (PROs) to advance their research programs.

How MUSIC Uses PROs to Inform Shared Decision Making

The Michigan Urological Surgery Improvement Collaborative (MUSIC) is a physician-led quality improvement organization that evaluates and improves the quality and cost efficiency of care for patients with prostate cancer and other urologic diseases.

The statewide MUSIC registry is a recognized leader in urologic quality improvement. MUSIC’s significant program results make it a national example of the benefits of collaboration and using data, including PROs, for improving patient care.

  • Achieving a 50% reduction in prostate biopsy-related hospitalizations by implementing process changes for antibiotic prophylaxis focused on addressing fluoroquinolone resistance.
  • Using data to develop and implement evidence-based appropriateness criteria for radiographic staging of all men with newly diagnosed prostate cancer.
  • Developing an infrastructure for video-based assessment of surgical technique with the aim of linking such assessments with patient-reported outcomes and perioperative morbidity data.

Quality Improvement Priorities

One of MUSIC’s key priorities focuses on improving patient outcomes after radical prostatectomy. To achieve this goal, MUSIC and ArborMetrix developed the infrastructure for measuring and improving longitudinal functional outcomes and health-related quality of life after radical prostatectomy.

PRO Program Design

MUSIC uses patient-sourced data to understand the longitudinal trends of treatment effects. Here’s a high-level look at their program:

  • Patients receive a baseline questionnaire before surgery, and then receive the same survey at three, six, 12, and 24 months following surgery.
  • All data flows directly into MUSIC’s registry.
  • Patients review their survey responses with their physicians via a PRO Patient Summary Report. Each patient’s individualized report helps the patient and physician better plan for the patient’s recovery pathway following surgery.

Results with PRO

When it comes to the success of any registry program, measurable, published results are the arbiter.

MUSIC frequently publishes peer-reviewed manuscripts using registry data. The two papers below demonstrate the high response rates achieved, and the use of industry standard measures to gauge quality of life after surgical interventions.

A study published in the September 2017 edition of Urology concluded that “Collection of electronic PRO via this unified, web-based format was successful and provided results that reflect expected recovery and identify opportunities for improvement.”

The study published in August 2019 edition of the Journal of Clinical Oncology examined the validity of PROMIS measures following radical prostatectomy and concluded that “PROMIS Global Satisfaction With Sex Life and Interest in Sexual Activity single-item measures are fundamental measures in prostate cancer survivorship. Patients are interested in sex despite functional losses and can salvage satisfaction, thereby giving insight into attainable patient-centered survivorship goals for sexual recovery after radical prostatectomy.”

Key Takeaways for Your PRO Program

  1. Clinical focus on specific procedures and patient cohorts allows for deeply granular data collection that supports meaningful quality improvement.
  2. Patient follow-up cadence is clinically relevant to the procedure, capturing data at intervals important for trending.
  3. The scope of the PRO surveys captures important quality of life and mental and emotional health variables that provide important context to recovery data.

How PC4 Extends Patient Engagement to Family Engagement in PROs

The Pediatric Cardiac Critical Care Consortium (PC4) aims to improve the quality of care for pediatric heart patients through transparent data sharing that allows hospitals to evaluate their own outcomes and learn best practices.

Research Priorities

PC4 uses patient-reported outcomes to collect routine standardized longitudinal data on children who have undergone congenital heart surgery. With improvements in early survival following congenital heart surgery, it has become increasingly important to understand longer-term outcomes. But routine collection of these data is challenging and remains very limited.

PRO Program Design

PC4 data collection goals from patients and families encompass all aspects of physical, mental, emotional and social health, and follow patients through to their adulthood. Because these surveys tend to collect many variables, they have designed their survey frequency and formats to be as low-burden as possible, while still collecting the required data elements.

  • PC4 PRO data collection occurs annually and is age-customized.
  • The survey includes both a general questionnaire and specific quality-of-life questions related to school performance, physical activity, and other measures.
  • The PRO module is directly integrated with the PC4 registry, which allows for automated identification of eligible patients and integration of the follow-up data with baseline demographics and clinical data contained within the registry.

The PRO system is designed to automatically generate an email with a pre-authenticated link for age-appropriate survey completion for those who meet criteria and are due for follow-up. PC4 uses email as its PRO methodology, as preferred by patients and families.

Key Takeaways for Your PRO Program

  1. Customize your survey to engage your target patient demographic. This is for both the technology that you use to deliver the survey, and the language in which you write the survey.
  2. Engage your population for the long term to allow for deeper understanding of longitudinal outcomes that could open many new opportunities for meaningful research.
  3. Don’t forget the families. Caregivers and families play an important role in providing important health information for patient populations with limited mobility or technical sophistication.

How the National Hemophilia Foundation Delivers Longitudinal Patient Engagement at Scale

The National Hemophilia Foundation (NHF) partnered with us to deliver a patient-centric research registry focused on improving the quality of life of persons with a bleeding disorder and enhancing the ability of external researchers to discover and measure the impact of transformational therapies.

Research Priorities

NHF is using PRO data to drive rapid-cycle research. While they utilize PRO in the traditional format of highly detailed, structured, and coordinated surveys delivered on a specific cadence, they also use PRO to do rapid response surveys on hot topics that impact their population.

The hot topic surveys are typically fewer than 10 questions. They have included topics ranging from vaping use in specific patient cohorts to how the COVID pandemic has affected the community. These rapid-response surveys help inform and adjust NHF’s emerging research priorities.

PRO Program Design

Especially important, NHF also helps affected individuals’ level-set their experience compared to others.

Patient-facing reporting uses deidentified and aggregated data from other patients in their cohort filtered by diagnosis or other relevant demographic and clinical attributes. This powerful reporting encourages participants to engage in PRO surveys so they can unlock additional reporting topics and add their data to the community totals.

NHF Longitudinal Patient Dashboard

NHF Longitudinal Patient Dashboard Displays Aggregated Community Statistics

Key Takeaways for Your PRO Program

  1. PROs can be used with engaged patient populations to rapidly gather data on emerging health topics.
  2. Providing data back to patients encourages ongoing engagement in survey participation and gives them a powerful tool for shared decision-making.
  3. Patients who see their data next to other patients like them have context and clarity on their own experiences.

Patient-reported outcomes provide a more insightful data story.

We continue to invest in robust, easy-to-use patient-reported outcome tools that collect the right data from the right patients at the right time. PRO platforms are the optimal mechanism for capturing subjective symptoms and quality of life metrics, without the data passing through the interpretive filters inherent in outcomes recorded in the medical record.

Let’s brainstorm which of your programs, personas, and patient cohorts that could benefit from this powerful toolset.

If you have any questions or would like to learn more about our patient-reported outcomes solutions, contact me at bmoore@arbormetrix.com.

3 Essential Steps for Successful Patient Surveys

3 Essential Steps for Successful Patient Surveys

3 Essential Steps for Successful Patient Surveys

Healthcare analytics technology and clinical data registry software have made it easier to collect, organize, and analyze actionable, patient-sourced data.

In this post, we cover the three steps involved for successful patient surveys:

  1. Building and distributing patient surveys.
  2. Analyzing patient survey data.
  3. Sharing and using patient-sourced data.

Step 1: Building and Distributing Patient Surveys

Patient-reported outcomes (PROs) are typically collected through a patient survey. They can be collected in the clinic or in an office setting, but increasingly are delivered to patients to complete in their own home and on their own time.

Patient Survey Design

When setting out to survey your patients, sometimes the tactical tasks that need to be done can feel overwhelming.

This list of considerations can be helpful as you plan your work:

Decide on an appropriate survey length. The length of your survey depends on how often your patients are surveyed. If your patients are going to be surveyed frequently (weekly, monthly), keep your survey as short as possible to achieve a higher completion rate. If your patients are going to be surveyed less frequently (quarterly, annually), they will tolerate longer surveys. Research tends to support approximately 30 questions as a maximum length to ensure surveys are completed.

Write for comprehension. Clinical information can be ill-defined and misinterpreted. Health information can also be especially difficult to process or overwhelming when the focus is one’s own personal health. Take steps to keep survey language as simple and straightforward as possible and confirm that patients understand what the question is asking or the information being shared. Doing this benefits everyone and lowers the risk of miscommunication.

Make your survey useful. When patients understand why questions are being asked of them, they are more likely to engage. Here are a few questions to ask yourself:

  • How will you give patients access back to the data they have provided?
  • Do they know what their participation means to improving care?
  • Will providers be able to use the data to better inform care decisions?
  • Are they on board with being held accountable to how patient satisfaction is being measured?

Decide on what you would like to measure. There are options here:

  • Using validated survey instruments to collect data that is known to have excellent validity and measurement value. Some of these may have license fees, but this will greatly simplify your survey design if applicable.
  • Creating custom surveys can also be valuable to measure very specific clinical or emerging health topics that can be used for targeted research projects.

Decide on how the data should be collected. Drawing from a broad library of question types and answer variables will allow your survey to capture a wide variety of discrete and free form data elements. When choosing how to present each question, consider the type of device the patient will use to respond. Some answer types can be a challenge to answer on a mobile screen!

Build your survey. We work alongside our clients throughout the tactical design steps described above. We also can take it a step further. We build the survey for you and give you a link to test the experience your patients would have – the duration, reading level, measurement instruments, and usability of the questions and answers. This gives you the confidence the survey experience will be positive. We also have a self-service survey builder if you prefer to take these steps on your own.

Patient Survey Technology


Now that you have considered the tasks to build your survey, ensure you’re using the best technology. Successful patient surveys collect the right data from the right person at the right time. Your PRO technology should:

  • Support access through any web-connected device.
  • Securely deliver pre-authenticated survey links that do not require a username or password.
  • Use clinical event or time-based triggers to deliver surveys automatically when necessary and most relevant.
  • Support integration with other administrative systems, e.g. scheduling.
  • Support standardized measurement instruments (ODI, PROMIS, etc.) or specialty-specific custom surveys.
  • Use traditional survey functionality, including advanced skip logic, workflows, text formatting, help text, and other standard features.
  • Support varied answer types, e.g. Likert scale, ranges, radio buttons, checkboxes, and more.
  • Present content back to the patient in response to their survey answers, in the form of adherence guidelines, helpful resources, or important trends in their data.
  • Be easy-to-use so you can design and distribute your own surveys whenever, wherever.
  • Track the distribution and completion percentages to determine survey effectiveness.

Step 2: Analyzing Patient-Sourced Data

Once you collect and organize it, there is tremendous analytic value in patient-sourced data. Specifically, it:

  • Fills data gaps that often exist from other registry data sources by going beyond what happens in the exam room.
  • Can be blended with other data sources to provide a (1) fuller understanding of an individual's health; and (2) better understanding health factors among distinct patient populations or patients with specific clinical profiles.
  • Enables longitudinal analysis.
  • Supports tracking additional measures (e.g., quality of life, functional abilities, satisfaction) that would not otherwise be possible.
  • Informs predictive models to enhance clinical decision support tools.

Step 3: Sharing and Using Patient-Sourced Data

Patient-reported data has unlimited purpose. But it’s only as useful as you make it. Here are a few examples of how registries are using PROs to advance their goals:

  • Sharing pre-operative and post-operative results: The Abdominal Core Health Quality Collaborative's registry monitors controversial mesh repair procedures in the U.S. It is accepted broadly in the medical community that better evidence of device and surgical performance is needed and can inform how physicians choose to practice. The power of the data in this registry is supplemented by using PROs pre-operatively and post-operatively to obtain long term follow-up from patients who undergo hernia surgery.
  • Predictive calculators for gauging risk and making informed decisions: The Michigan Bariatric Surgery Collaborative uses long-term PRO survey responses on patient weight and satisfaction with results to determine the likelihood of adverse events and complications by procedure and resolution of comorbidities. This predictive calculator can be used by physicians and patients together to discuss the risk tolerance and likely outcomes for each option.

A Checklist for Patient Surveys

When you put it all together, patient survey should be Useful, Usable, Used, and Understood. As you take steps to design, build, and distribute patient surveys, keep these questions in mind:


  • Will the responses lead to better care decisions and outcomes?
  • How will physicians and researchers use this information?
  • How is the survey useful to patients?
  • What’s in it for them?


  • Is the survey easily accessible?
  • Can patients take it in a setting that is convenient and comfortable?
  • What is the appropriate frequency and length? (What is relevant and actionable, but not burdensome?)


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


  • Are the questions easy to understand?
  • Do patients know what is being asked of them?
  • Are you sharing data back in a way that is easy to interpret?

Get Started with Patient Surveys

The journey to design powerful surveys, analyze the data that they provide, and then to share the data to change healthcare delivery is worth taking. We are here to help.

If you have any questions or would like to learn more about our patient survey and patient-reported outcomes solutions for clinical registries, contact our team.

How to Engage Patients and Collect Valuable Patient-Reported Data

How to Engage Patients and Collect Valuable Patient-Reported Data

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.

Patient-Reported Outcomes and Clinical Registries: The Basics

Patient-Reported Outcomes and Clinical Registries: The Basics

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. Some use PRO data and measures to enhance or supplement other sources of data. Others, like the National Hemophilia Foundation, have centered their entire registries on patient-sourced 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.

Get Started with PROs

Informing a more complete view of quality with patient-reported outcome data helps you achieve even greater results with your clinical data registry or quality improvement program.

Our patient reported outcomes tools collect the right data from the right patient at the right time with modern and intuitive patient-reported outcome surveys, accessible through any web-connected device. Our technology also helps you simplify conversations between patients and family members and their care teams with personalized, patient-centric dashboards that highlight a timeline of personal and clinical events, health statistics, and trends.

If you have any questions or would like to learn more about our registry and patient-reported outcomes solutions, contact me at bmoore@arbormetrix.com.