In April 2022, Industry Standard Research conducted a survey on behalf of PPD (the clinical research business of Thermo Fisher Scientific) with 152 leaders of biotech and pharmaceutical organizations worldwide to gather their insights on industry trends.

Not only did 45% of respondents select a greater use of real-world evidence as the current area of greatest opportunity in pharmaceutical research, but also 55% of respondents cited patient recruitment, including retention, as the current area of greatest challenge.Âą

Business concept growth success process, Close up Woman hand arranging wood block stacking as step stair on paper blue background, copy space.
This begs the question: How can you capitalize on the area of greatest opportunity (real-world evidence), when doing so means overcoming the greatest challenge (engagement)?

A reduction in engagement in real-world studies can relate to:

  • Attrition: Leaving the study or being lost to follow-up
  • Completion: Remaining in the study but not providing complete data (e.g., a participant completing 50% of the administrations of a survey).

Improving engagement

In the way that a person is more likely to be engaged in a conversation that they are contributing to, a participant is more likely to be engaged in a study which they are involved in the development of. Participants can be meaningfully involved in real-world studies in a range of ways:

  • Input in study design
  • UI/UX design or user acceptance testing
  • Social media or patient webinars
  • Review of participant-facing material
  • Review of interim analyses

Alongside increasing patient involvement, investigators can consider implementing rewards schemes early on in development, or adaptively during the study, to boost engagement.

How to measure engagement in real-world studies?

Measuring engagement before, during, or after implementation of such measures is dependent on study design; this means that different approaches are needed to measure engagement for cross-sectional studies versus longitudinal studies.

Cross-sectional studies
• % of participants completing each/all patient-reported outcome (PRO) instruments
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.
Vitaccess case study

Study objective: To capture real-world disease management, burden, and health-related quality of life in 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 on their lives over a two-year study period.

Retention and engagement strategies:​

  • Establishing a scientific advisory board to advise on strategies to adopt​
  • Creating study app profile and tracker pages to allow participants to create their own record of disease management; this was associated with high completion rates​
  • Distributing “data nuggets”, containing snippets of study data, via patient associations​
  • Monitoring adaptively: the survey completion schedule was revised to reduce participant load​
  • Implementing rewards (in the form of charitable donations) for completion of surveys: this resulted in a 41% increase in survey completion rate from pre-launch

Study benefits:​

  • Granular global dataset for health technology appraisal and publications​
  • Strengthened sponsor links with patient advocacy groups and key opinion leaders

At Vitaccess, we have wide-reaching experience of maximizing patient engagement in our real-world studies. For more information on our studies, or to learn how we can help you, get in touch today at This blog is based on a webinar hosted by Vitaccess. For access to this webinar, and all webinars that we have hosted, please visit our dedicated webinars page.

References Âą

By Sam Llewellyn and Fatemeh Amini
Skip to content