Patient engagement and retention in digital real-world patient-reported studies
Summary
Patient engagement, including retention, is one of the major challenges in digital real-world patient-reported studies, and can be determined by the level of attrition (i.e., leaving the study or being lost to follow-up) or completion (i.e., remaining in the study but not providing complete data).
The aim of this study was to determine methods of improving and measuring patient engagement and retention in digital real-world patient-reported studies. Several internal case studies of tried-and-tested approaches to improving participant engagement and their success were reviewed, thus informing suggestions for ongoing or prospective cross-sectional or longitudinal studies.
Strategies to boost engagement and retention
Strategies to boost engagement and retention include:
1. Meaningfully involving patients in study design and development – for instance, to:
� perform user acceptance testing
� contribute to patient webinars
� review participant-facing material.
2. Including patients on a study scientific advisory board (SAB) alongside disease experts.
� SABs play an important role in guiding the development and conduct of real-world studies, from input at the earliest stages of study design through to advice on data analysis and resulting publications.
3. Implementing reward schemes early on in development or adaptively during the study, for instance in the form of:
� direct payments
� donations to patient associations
� retrievable tokens.
4. Keeping patients informed of study findings through publications, webinars, emails etc.
Measuring engagement
Cross-sectional studies
● % of participants completing each/all patient-reported outcome (PRO) instruments
Case study
Longitudinal studies
● % of participants completing each/all PRO instruments at each survey completion window
● % of participants checking/updating background information during the study
● % of participants using a symptom tracker
For longitudinal studies, researchers must first decide how to define the pool of participants who are still “active” and therefore impressionable.
Study objective: To capture real-world disease management,burden, andhealth-related quality of lifein individuals living with a rare disease.
Data capture: Participants were asked to complete surveys (including PRO instruments) on their disease, its management, and its impact ontheir lives over a two-year study period.
Retention and engagement strategies:
� Establishing an SAB to advise on strategies to adopt.
� Creating study app profile and tracker pagesto allow participants to create their own record of disease management; this was associated with highcompletion rates.
� Distributing “data nuggets”, containing snippets of study data,via patient associations.
� Monitoring adaptively: the survey completion schedule wasrevisedto reduce participant load.
� Implementing rewards(in the form of charitable donations) for completion of surveys: thisresulted in a 41% increasein surveycompletion rate from pre-launch.
Study benefits:
� Granular global dataset for health technology appraisal and publications.
� Strengthened sponsor links with patient associations and key opinion leaders.
Take-home messages
Dependent on the design, various approaches can be implemented in digital real-world patient-reported studies to maximise patient engagement and retention, increase patient-centricity of research and ultimately provide granular datasets for health technology appraisals and publications.
Figure 1: Areas of patient involvement in digital real-world studies Table 1: Methods of measuring engagement in cross-sectional versus longitudinal studies