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.