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.

Here is an example of how registries are using patient-reported outcomes (PROs) to advance their research programs.

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.

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.