Planning your Study

planning notebook with colored pencils

The planning stage involves activities before submitting an IRB proposal and goes as far back as before submitting a grant application. This process includes conceptualizing the study, understanding the target population, which involves building relationships with the community to understand their needs.

Implementing successful recruitment strategies requires early planning, including understanding how to access a diverse pool of prospective study participants, facilitating their participation, and being aware of ways in which may inadvertently exclude qualifying participants.

Who is your target population?

When developing strategies and materials, consider language accessibility- language that may be likely to exclude people (e.g. gender identity, requiring that participants must be US citizens, etc.).

Condition or Diagnosis

  • Patients with specific medical conditions

Patient Recruitment Strategies and Tools Guide

Age

Gender and Sexual Orientation

  • Men
  • Women
  • Transgender
  • Non-binary/non-conforming
  • LGBTQIA (Lesbian, Gay, Bisexual, Transgender, Queer, Intersex, Asexual)

Location

  • What specific geographic area will you be recruiting from?

Learn more about Chicago communities:

Based on your power analysis, how many study participants do you need to recruit?

  • Do you need to obtain an estimate of patients who meet your inclusion criteria? Learn how here.

Note: Overestimating the recruitment pool is a common mistake. Break down the total number by year/month/week. 

Race/Ethnicity

*Questions on race and ethnicity as determined by the US Census may not reflect participant’s identify. For example, Latinos may not identify themselves with any of the races listed other than Latino/Latinx, which it is listed under “ethnicity” per the Census’ categories. 

Alaska Native

American Indian/Native American

Black/African American

Black/Caribbean American

East Asian/Asian American

South Asian/Indian American

Middle Eastern/Arab American

Native Hawaiian/Pacific Islander

Non-Hispanic White

Hispanic, Latinx

Multiracial/multiple racial and ethnic groups

Immigrants and refugees with/without specific nationalities.

*Note: These are additional things to consider about immigrants’ participations: 

  • Community members from US territories such as Puerto Rico may consider themselves citizens but also immigrants if not born in U.S.  Questions such as “Were you born in US” may be different for them.
  • Participants’ level of academic education.
  • English may not be their dominant language.

What barriers do you anticipate to recruiting your sample?

  • List barriers you anticipate given the nature of the study (provider level barriers). E.g., number of appointments at a research site, duration of appointment, other burdens on participant.
  • Anticipate barriers at participant’s level (e.g. financial resources to travel, work hours, travel distance, forget appointments, etc).
  • List possible ways of addressing those barriers  (e.g., consider scheduling rides to research site, schedule weekend hours, budget for staff time to make reminder calls)

How will you make the study open to underrepresented groups?

  • Is the study accessible to non-English speakers?
    • Consider: translators, translation services, staff who speak other languages
  • Can people with disabilities participate in this study?
    • Consider: Is the research site wheelchair accessible? What accommodations do you have available for people with visual or hearing impediments (e.g., captions)?
  • What resources do people need in order to participate in the study?  Can you think of ways of reducing barriers?  Based on your study, consider resources that people may need to participate:
    • Cost of transportation, and or parking
    • For older adults or persons with disabilities, assistance getting to places
    • Availability during work hours
    • Childcare or toys to keep children busy
    • Access to electronic devices

Building Trust

  • What is your connection with this particular community?
    • How will you continue to stay involved in this community/with partner organizations?
  • Are you considering partnering with community organizations that can help you connect with prospective participants?
  • Consider hiring team members from this community.
  • Understand and acknowledge reasons for mistrusting research.
  • Be prepared to explain how participants, and their communities, will benefit from research in the short and long term.
  • Training Community Health Workers as Research Advocates

How to identify prospective community organizations: 

Funders usually list names of grantees, areas of work, and featured projects. E.g United Way- list of agency partners

Aldermen/women often list community organizations within their ward. E.g 2nd Ward Community Organizations

Chicago COVID-19 Resource Repository offers resources and names of organizations for physical/mental health, housing, food, financial and legal services, substance use disorder services, internet access, childcare, education, volunteer opportunities, donations, entertainment and more.

Conducting research in Chicago Public Schools – provides  guidance on policy and priority areas for conducting health and wellness research at Chicago Public Schools

Priority Populations Toolkit is a resource for researchers who would like to work with populations facing health disparities and underrepresentation in research. It contains lists of community organizations that work with these populations.

Making Community Partnerships Work. Creating and sustaining a partnership requires patience, an
understanding and appreciation of group process, and cultural sensitivity. This toolkit is designed to give you the background and tools you may need to engage a community in a partnership. You will learn how to work
with community members to achieve a shared goal.

What types of study incentives will you provide?

  • How many data collection points will you include in the study?
    • What type of incentives do you need for each?  Will the incentive amount stay the same throughout the duration of the study?
  • Consider the type of incentive you will offer. E.g. gift cards, direct deposit, cash.

Cost associated with community engagement strategies

  • Space rental for community site
  • Compensation for Community Advisory Board (CAB).
    • Number of meetings per year
    • Food/beverage costs
    • Training*
  • Compensation to partner community organization(s)

Cost associated with sharing findings with the community.

  • How will you share findings with the community at large?  E.g Townhall presentations, newsletters, fliers etc.

Will you be developing a website to direct participants to learn more about the study?

Cost associated with recruitment strategies

  • Paid social media ads and staff time to monitor
  • Translation of materials into other languages
  • Interpretation services for non-English speaking participants

Will you provide transportation cost? 

  • E.g CTA pass, cash.
  • Parking validation

*You can find IRB training for partner community organizations here.

Explaining recruitment, retention and community engagement in a grant application

Mutually beneficial partnerships with community organizations go beyond recruitment and retention. Consider ways in which you can build long term trusting relationships, which are the types of partnerships that organizations are mostly interested in. Building meaningful relationships requires learning about organizations’ work, interests and needs and understanding how they intersect with your work. Funders will be interested in learning details about how your project can be sustainable through your partnerships.

Recruitment and Retention Strategies

These are some recruitment strategies you could discuss with partner organizations.  Once these strategies have been agreed upon with your community partner, you can discuss in detail in your grant application.

  • Establish partnerships with community organizations/religious institution/advocacy group that works with this target population. Include information about how this is a mutually beneficial relationship. Describe the role to the partner organization. Here are some examples:
    • Distribute promotional materials among in-person program participants throughout the duration of the project
    • Send information about study in their weekly newsletter
    • Social workers will share flyers with program participants
    • Community health workers will screen participants
  • Partner organization will serve as research site
  • Partner organization will recruit X (total or percentage) of study participants.
  • If more than one community partner is involved, consider including a table that includes project timeline, and role for each organization.
  • Establish a Community Advisory Board (CAB).  Learn how to start one.
    • Options for input & feedback:
      • They can assist the research team in identifying recruitment and retention strategies
      • The research team can discuss progress and request input on a regular basis throughout the duration of the study
      • The research team can discuss findings and ideas for dissemination with the community at large
    • Budget implications:
      • Compensate CAB members for their time
      • For how long would CAB be active?  How often will they meet –e.g. monthly, quarterly?

You can seek additional support from CCTS’s Community Engagement and Collaboration Core, including advice on recruitment and retention matters.

Recruitment Strategies

Recruitment Strategies

Your budget should reflect the estimated cost of recruitment per participant based on the strategies you plan to implement. A combination of active (interaction with prospective participants) and passive (no interaction with prospective participants) strategies will work best.

Active:

  • Table an event where you can talk with prospective participants
  • Approach prospective participants at doctors’ office
  • Identify affinity groups in social media platforms

Passive:

How will you reach a diverse sample to make your data representative?

Learn about underrepresented populations.

Consider which strategies you will use for recruitment for budget planning purpose

Consider demographic characteristics in choosing recruitment strategies. E.g. youth are likely to be easier to reach via social media, sports facilities, while senior citizens may be easier to find at senior centers, libraries, and parks.

Flyer or Advertisement Placement:

  • Neighborhood park
  • Grocery store or local market
  • Transportation locations (e.g., buses, trains).  This has a higher cost.
  • Social Media
  • Local Newspapers
  • Magazines
  • Public libraries at neighborhoods of interest
  • Neighborhood parks
  • Chicago senior citizen centers
  • Veteran centers
  • Offer to do presentations at events or community organizations
  • Community organizations

Other strategies to consider:

  • Is there a community organization that serves this population that may be interested in partnering with you?  You should reach out early, even before submitting the grant application.  They will appreciate being consulted in advance.
  • UIC and partner organizations’ email subscriptions and distribution lists
  • Direct mail- see how to obtain potential patient participants above.
  • Volunteer registries

Recruitment of racial and ethnic minorities to clinical trials conducted within specialty clinics: an intervention mapping approach.

Recruitment strategies in randomised controlled trials of men aged 50 years and older: a systematic review.