Formative research allows study teams to seek stakeholder perspectives early in the research registry process.
Formative research can help address questions such as:
Formative research can help you understand motivators and concerns of your stakeholders that may affect recruitment or other aspects of your research registry. One such example of formative research is described below.
In Perspectives on neurological patient registries: a literature review and focus group study, Korngut et al. (2013) summarized literature reporting patient perspectives on registries generally. Findings from the literature review included:
They also conducted focus groups exploring patients’ perceptions on research registries for people with neurologic conditions. Examples of focus group findings include:
There are many ways to embark on your formative work, and using multiple methods can be beneficial. Potential methods include: