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Formative Research

Formative research allows study teams to seek stakeholder perspectives early in the research registry process.

  • Why Conduct 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?

    At UNC-Chapel Hill : Formative Research

  • Key Considerations

    • 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.

    Conducting Formative Work? Consider Examples from the Literature.

    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:

    • Altruism and advancing research to develop treatments and cures are factors (among others) motivating registry participation
    • Concerns related to privacy and in-person visit requirements are barriers (among others) affecting participation

    They also conducted focus groups exploring patients’ perceptions on research registries for people with neurologic conditions. Examples of focus group findings include:

    • Participants would want to have a clear understanding of the registry purpose before deciding to participate
    • Some participants would want someone they knew and trusted, such as their healthcare provider, to invite them to participate in a registry
    • Participants would want to know that their medical information would not be connected to their personal identifying information
  • Formative Research Methods

    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.

    Relevant Resources: Conducting Qualitative Research

Cite and Submit graphic - All publications, press releases, or other documents that result from the utilization of any NC TraCS Institute resources are required to credit the CTSA grant and comply with NIH Public Access Policy (submission to PubMed Central).

Questions? Contact us at nctracs@unc.edu or 919-966-6022.

© 2019-2022. The NC TraCS Institute is the integrated hub of the NIH Clinical and Translational Science Awards (CTSA) Program at the University of North Carolina at Chapel Hill. The Registry Toolkit website is supported by the National Center for Advancing Translational Sciences (NCATS), National Institutes of Health, through Grant Award Number UL1TR002489. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH. | accessibility