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T-27: Measuring the Patient Experience: Learnings from Real World Implementation to Improve Data Collection and Patient Engagement

Poster Presenter

Renee Willmon

Senior Director, RWE
Alira Health
Canada

Objectives

Patient experience data is an increasingly valuable form of Real World Data to inform the entire lifecycle of healthcare delivery and drug development. This research investigates research and patient engagement approaches across multiple conditions to identify best practices.

Method

Data from research and patient engagement activities implemented through an integrated digital platform were collectively analyzed to identify common elements required for success across multiple settings including inpatient, outpatient and community care settings, and virtual observational trials.

Results

The data collection platform used (Health Storylines) consists of a patient-facing app, remote monitoring portal and analytics dashboard, and in each case was paired with engagement strategies tailored to the specific therapeutic area and patient demographic under study. Data collected from patients in each instance included demographics, symptom burden, journaling, tracking of various health-related behaviors (such as mental health and medication adherence) within the app, and validated patient-reported-outcome instruments. Calculated results included engagement and adherence to the app, outcomes, and qualitative themes that patients expressed through the app. The results show that a patient engagement strategy tailored to the therapeutic area under study is an essential component to maintaining adherence and data quality when using mobile apps for research and care delivery. Leveraging principles of self-management such as goal-setting, problem-solving and self-monitoring in app design improves engagement and retention relative to expected engagement based on non-health related mobile apps. Increased direct interaction with a health care professional or research coordinator was associated with improved engagement (e.g. in a study of individuals with spinal cord injury, there was 85% retention across the study period in an inpatient setting, vs. 70% retention in a community setting with fewer HCP visits). Observational studies leveraging the digital platform for data collection have also yielded important findings that impact patient care. In a study among patients with Neuroendocrine tumors, qualitative analysis of journal data highlighted an important difference in treatment experience between study groups that was not detected using multiple validated quality of life instruments. Regular use of the app was also associated with a reduced reported impact of symptoms over the course of the study despite no change in the pharmacological intervention.

Conclusion

The combination of “high-tech” with “high-touch” personalized engagement is a valuable strategy to improve patient engagement in care and research, and our findings support the application of platforms such as Health Storylines as a digital therapeutic. Personalized engagement is a fruitful area to incorporate technological advancements such as artificial intelligence and machine learning to streamline the direct human-to-human interaction between patients and healthcare stakeholders. In the interim, however, there is significant value in tailoring engagement strategies to specific patient cohorts by better understanding the experience associated with their condition(s) and leveraging behavioral insights to drive engagement and adherence with digital tools. Increasing patient engagement by leveraging the experience data collected through integrated platforms can inform the patient journey of real-world patients who may otherwise not meet the rigorous requirements for RCT studies. The resulting improved understanding of patient experiences and unmet needs relative to traditional data collection methods such as surveys or interviews with small cohorts enable mobile apps to efficiently engage patients with their care networks, providers, and researchers in an effective two-way communication channel. As a result, integrated digital platforms have significant potential to improve outcomes while collecting valuable actionable data that improve the delivery of care and the entire lifecycle of the development of new therapies.