Formative Research

Formative research can help address questions such as:

• What research topics are most important to stakeholders, and how can I incorporate these into my registry?
• Is this registry needed? Is there another existing resource with which I can collaborate, and thus reduce participant burden?
• What are stakeholders’ understandings of the purpose and function of research registries? What misconceptions exist?
• What concerns might potential participants have about enrolling in the registry? What practical barriers, such as transportation or time constraints, might prevent individuals from enrolling?
• What might motivate potential participants to enroll in the registry?
• How can I build upon motivators, address concerns, and reduce barriers when designing registry recruitment and enrollment processes?
• What are the best ways to reach potential participants?
• How do individuals want to engage with the registry after joining? How often do they want to receive updates, and in what format?

• It is best practice to offer incentives to your stakeholders to compensate them for their time and recognize their contributions to your project. Consider providing incentives such as cash or gift cards to stakeholders who participate in formative research activities.
• Formative research activities generally require IRB approval.

There are many ways to embark on your formative work, and using multiple methods can be beneficial. Potential methods include:

• Literature review –The first step in your formative work may be conducting a literature review about participant and other stakeholder perspectives on your research topic and/or registry processes. Your literature review may identify lessons learned from previous research and illuminate questions requiring further exploration.
• Informal conversations with stakeholders –You can learn a great deal through informal conversations with stakeholders. Staff at an organization serving your population of interest, for example, may be able to provide feedback about your proposed registry through an informal meeting or phone call. Talking to other researchers who have conducted studies involving your target population may help you identify best practices and potential pitfalls, and alert you to other resources that may exist.
• Qualitative research – As a more formal approach, qualitative research methods such as focus groups or key informant interviews with individuals from your target population can provide valuable information about stakeholder perspectives on your registry.