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Participant Retention

Engagement with registry participants should continue well beyond the recruitment and enrollment phase, extending throughout the entire life cycle of your project.

  • Promoting Participant Retention

    Registries may differ from other research studies that require follow-up visits or collect data on an ongoing basis. However, many strategies used to improve retention in more traditional studies can also be applicable to maintaining interest and ongoing communication in registries.

    Examples of retention strategies that may be applicable to research registries include:

    • Create a welcoming atmosphere so that when participants do interact with the study team, they have a positive experience.
    • When enrolling in the study, ask participants to provide multiple contact methods, including names of individuals who can be contacted if the team cannot reach the participant. During the consent process, request permission to reach out to these alternative contacts, and explain what type of information would be requested in these situations. 1
    • During the initial encounter, ensure participants understand future follow-up procedures. 1
    • Use multiple retention strategies. 2
    • If ongoing, active participation is required:
      • Explain the reasons why follow-up activities are requested. 1
      • Address participation barriers such as transportation issues (e.g., provide transportation assistance) or lack of consistent phone number (e.g., use multiple re-contact methods). 3
      • Offer incentives (i.e., money or gifts) for completion of follow-up activities. 1, 4, 5
    • Maintain regular contact with participants. 6
    • Ensure cultural competence among staff, including hiring staff from the communities in which you are recruiting, hiring staff who speak multiple languages, and providing adequate training. 6
    • In general, ongoing stakeholder engagement, including forming partnerships with organizations serving your target population, can improve retention rates. 6

  • Preferences for Follow-Up Communication

    There are many different approaches for participant follow up, regardless of your approach, keep these key considerations in mind:

    • Follow-up communication is often considered a research activity. Consult your institution’s IRB to see if you need approval for follow-up activities involving communication with participants.
    • Participant follow-up takes time and resources. Dedicate adequate staff time and budget for follow-up activities.
    • Be sensitive to participant burden when planning follow-up activities and communication. Consider asking participants how often they want to be contacted, consulting with stakeholders about contact frequency, and/or allowing individuals to select their preferred contact frequency.
    • As with all study materials, follow-up communication is best when written in an accessible manner that avoids research jargon – use “plain language”. Your stakeholder partners and Community Advisory Board members can play an important role in creating and/or reviewing follow-up materials.
    • Consider providing follow-up materials in multiple formats (e.g., study website, in-person event, and newsletter) to appeal to varying preferences.

    Preferences for Follow-Up Communication

    Every person and study population is different. Some people prefer receiving email communication, whereas others prefer mail or don’t have access to a computer. Some participants will access a Facebook page or website, whereas others may need targeted communication, like a personalized letter.

    The best way to make sure you are providing information that is relevant for your participants, in a mode that works for them, is to seek their input and feedback. Ask stakeholders about their preferences for follow-up during the formative research stage, seek advice from experts in the community, consult with a Community Advisory Board, or ask individual participants about their communication preferences during the enrollment process.

    Relevant Resources: Writing in “Plain Language”

  • Follow-up Communication Methods

    Even if your registry does not require ongoing, active participation from those who enroll, follow-up is vital for maintaining communication with participants and demonstrating respect and appreciation.

    • Many registries rely on being able to contact participants over time. Follow-up communication allows you to maintain your connection to the participant and ensure their contact information is accurate.
    • Having accurate contact information is necessary to reach participants for follow-up activities or to invite them to participate in future studies.
    • Providing participants with useful information through follow-up communication is a way to recognize their participation and how they have contributed to the registry and other studies.

    Follow-up communication can take many forms; several are displayed in the table below:

    Examples of Follow-Up Communication Methods Considerations and Characteristics
    Email or paper newsletters
    • Targeted (sent to individual participants)
    • Can allow for confirming contact information
    • Allows for sharing a wide range of information
    Birthday or holiday greeting cards
    • Targeted (sent to individual participants)
    • Can allow for confirming contact information
    • Birthday cards:
      • Individualized
      • Staff must follow-up throughout the year (rather than at specific time points)
    Study website or social media pages
    • May require less staff time than targeted follow-up communication methods, though staff should ensure website/social media pages are up-to-date
    • Provides opportunities for interactive features or multimedia communication, such as posting videos from the study team
    • Information may be accessed by other parties in addition to participants
    • Requires action on the part of participants (need to actively visit website)
    • Social media pages should be monitored for inappropriate or concerning user content
    Spotlights in other newsletters, such as a hospital newsletter
    • Information may be accessed by other parties in addition to participants; may contribute to further enrollment
    • Participants may not see the registry updates, as the overall newsletter may not be tailored to them
    In-person presentations, such as Town Hall Meetings or Research Participant Appreciation events
    • A variety of stakeholders can be invited, including current participants, potential future participants, Community Advisory Board members and community organizations
    • Allows study staff and participants to interact in-person
    • Provides opportunities for question and answer
    • Requires advertisement in advance
    • Helpful to provide food and cover parking costs
    • Likely that some participants will not attend (e.g. time and travel constraints)
    Example of Follow-Up Communication Methods Considerations and Characteristics
      Email or paper newsletters  
    • Targeted (sent to individual participants)
    • Can allow for confirming contact information
    • Allows for sharing a wide range of information
      Birthday or holiday greeting cards  
    • Targeted (sent to individual participants)
    • Can allow for confirming contact information
    • Birthday cards:
      • Individualized
      • Staff must follow-up throughout the year (rather than at specific time points)
      Study website or social media pages  
    • May require less staff time than targeted follow-up communication methods, though staff should ensure website/social media pages are up-to-date
    • Provides opportunities for interactive features or multimedia communication, such as posting videos from the study team
    • Information may be accessed by other parties in addition to participants
    • Requires action on the part of participants (need to actively visit website)
    • Social media pages should be monitored for inappropriate or concerning user content
      Spotlights in other newsletters, such as a hospital newsletter  
    • Information may be accessed by other parties in addition to participants; may contribute to further enrollment
    • Participants may not see the registry updates, as the overall newsletter may not be tailored to them
      In-person presentations, such as Town Hall Meetings or Research Participant Appreciation events  
    • A variety of stakeholders can be invited, including current participants, potential future participants, Community Advisory Board members and community organizations
    • Allows study staff and participants to interact in-person
    • Provides opportunities for question and answer
    • Requires advertisement in advance
    • Helpful to provide food and cover parking costs
    • Likely that some participants will not attend (e.g. time and travel constraints)

    Example content for follow-up communication includes:

    • Information about the registry, such as:
      • Aggregate demographic information about people who joined the registry
      • Registry updates, such as enrollment deadlines
      • Ways in which registry data is being used, including any findings from studies using registry data
    • Requests to send back updated contact information
    • Tailored health information based on registry topic areas or population, such as:
      • Up-to-date information about health conditions
      • Preventative health reminders based on the population
      • New research studies or findings that are relevant for participants
    • Additional opportunities for research participation
    • Participant and staff highlights
      • Informal bios of investigators and research staff
      • Participant profiles (with their permission)
    • Quotes from participants (again, with permission)
    • Gratitude: Thank participants and keep them informed of the progress they have facilitated through their participation