When considering whether to participate in research, people have to balance the study’s requirements and potential benefits against a number of competing priorities – work, family, friends, school, illness, general well-being, travel, unexpected events, and more. Once enrolled, if the research experience falls short of expectations or places outsized demands on individuals, it’s easy for it to fall to the bottom of a participant’s priority list. The results can be drop-outs, incomplete data, biased results, additional recruitment time and cost, and the loss of that individual for future research opportunities.
Evidation research has shown that people are willing to share their data, even over a long period of time, when they perceive the value they receive is worth the effort. Over the past decade, Evidation has engaged millions of people in sharing permissioned, longitudinal data about their health and experiences in everyday life for a variety of research programs. From these experiences, our team has learned that it is important to provide value within the context of participants’ daily lives.
What motivates people to participate in research?
Study teams wanting to provide value to participants often focus solely on compensation. However, the complexity of human nature requires consideration of the multiple possible motivators for each individual — whether they’re driven by intrinsic motivators, extrinsic motivators, or a mixture of both.
Intrinsic motivators include a desire to improve one’s health, feel part of a broader community, or give back to science. Knowing more about their health, how it compares with others, and strategies for change represent ways to support an individual’s motivation for better health. Delivering personalized health insights and content based on their data help people get more involved in their care and support conversations with healthcare providers. Alerts for health events (atrial fibrillation), risks to their health, or indicators of disease (wearable data indicating the flu) can also encourage people to be more proactive about their health.
Many people want to feel as if they are part of a larger network, and community-building activities and material can help people remain more engaged in the program. These types of activities include showing them they are not alone by sharing community insights and providing supportive resources that go beyond specific research outcomes. Similarly, individuals wanting to contribute to research for altruistic reasons benefit from shared research insights and outcomes from the community’s aggregated data. In addition, they appreciate timely articles describing how the participants’ contributions have helped progress scientific research and healthcare.
Incentives and challenges represent ways to extrinsically motivate participants. For the former, small rewards and points can be given when participants complete essential research activities or read relevant content. Distributing compensation resulting from the rewards and points throughout the research period keeps the individuals engaged, while dashboards showing ongoing progress and clear communication around next steps ensure they know what to expect.
Challenges involve fun, achievable, relevant, and tailored gamified activities that encourage ongoing survey completion and wearable use. Standing challenges and step counts are common examples of these. Successful programs involving challenges often account for individual differences in motivation in their design, allowing participants to set new, bigger goals once initial goals are set, if desired, or to just consistently meet goals over the longer term.
Tailor the engagement strategies to the research population and objectives.
Because the mix of motivators can differ by study population, type, and length, researchers could benefit from seeking input directly from a representative sample of the population. Study designs informed by participant input recognize and accommodate the real-life needs and experiences of individuals. This information can be reflected in study activities that accommodate real-life constraints and endpoints that matter to participants, which in turn meet their motivation for improved health and well-being, enhances long-term retention, instills greater trust in the outcomes or product, and improves uptake once it reaches the market.
Decentralized studies that aim to measure behaviors and outcomes as well as quantify associations to enhance generalizable knowledge could benefit from a mixture of strategies. Activities early in the study might include educational resources provided at eligibility screening, participant guides in the form of printouts and videos about what comes next, and compensation for completing the enrollment steps. After enrollment, consider a study dashboard logging participants’ completed activities and highlighting next steps, personalized insights derived from the collected data, and periodic reminders for activity completion. In addition, dedicated support staff can answer questions and provide ad hoc encouragement to complete activities. It is also important to carefully review any additional activities aimed at increasing engagement to ensure they do not inadvertently influence any behavior outcomes of interest or make it difficult to isolate the true effect of the variable under study. At the end of the study, providing an opportunity for participants to give feedback on their experience shows their input is valued and increases their investment in future research.
Long-term research, particularly studies aiming to enrich real-world evidence (RWE) with longitudinal data or develop digital biomarkers, requires sustained participant engagement. To achieve this, consider these strategies in addition to those described above for decentralized studies: risk-driven care prompts that offer timely support, a tiered reward system for continued participation, and a final, comprehensive report summarizing the study’s findings.
Continuous data collected from consumer or clinical-grade devices such as wearables can also complement other research activities by providing objective data while encouraging ongoing participation through challenges and rewards.
Design studies that fit participants’ lives.
Expecting that participants will modify their lives to fit research requirements risks high attrition and poor-quality data. Greater success at engaging participants stems from considering the study population’s needs, life constraints, and motivations during study design as well as finding ways to reduce the burden of study participation. Including study activities that participants find convenient and enjoyable can boost engagement and improve compliance and completion rates. With some early, thoughtful planning, researchers can deliver a study experience that participants find meaningful and want to complete, delivering value for research and participants alike.
For other strategies that place the participant at the center of study design, read our report “Faster results, better outcomes: How person-centered trial design improves clinical research.”