Recruiting & Retaining Participants

blocks with human figures

Track, evaluate and revise your recruitment strategies and tools in real-time keeping in mind participant barriers to participation.

Participant-Level Barriers

  • Distrust – Reflect on, and be respectful of distrust of researchers, health care providers, and institutions among community members. Some ways to address distrust are:
    • Research examples in history where research has wronged the community you would like to work with. Acknowledge historic, intergenerational trauma(s).
    • Ensure participants understand that participation is voluntary and mention/discuss the importance of community-engaged research and how it is now a tool for community advocacy and empowerment.
    • Be prepared to answer questions honestly.
    • Foster a sense of control among participants in their decisions to participate(E.g right to terminate participation at any time).
  • Lack of transportation to study site.
  • Financial costs associated with participation.
  • Stigma
    • Participation in research may be hampered by disease- or drug-related stigma. Potential participants may not be public about a condition they have or may not want people seeing them take a particular medication.
    • Time commitment (number of visits/year, commute time, time (days or hours) out of the office for visits)

Provider-Level Barriers

  • Budget constrains.
  •  Operating hours and access to special facilities.
  • Language limitations among study staff.
  • Research site location is not accessible to people with limited mobility.
  • Study is limited to English speaking participants.
  • Access to internet and technology literacy is needed to participate in the study.

Barriers you may be able to improve or influence

  • Research site(s) is accessible for wheelchairs and strollers.
  • Research site(s) are located near neighborhoods where you are planning to recruit participants.
  • Meet participants at a place that is more convenient to them (e.g., their home, public library, neighborhood site, etc.).
  • Provide reimbursement for transportation and or parking.
    • Provide potential participants with the information up front about being able to reimburse.
    • Incentive distribution is easy and timely.
  • Schedule transportation for participants.
  • Provide childcare for parents with young kids.
  • Study is available in other languages in addition to English.
  • Bilingual/multilingual and multicultural staff
  • Operation hours include after working hours and/or weekends.
  • Fostering cultural humility among study staff to ensure participants feel welcome and safe.

Set-up a tracking spreadsheet at the start of the study. Build-in a number of review timepoints as recruitment progresses so you can evaluate if your strategy is working and revisit if it’s not. Logs and conversations reviewing recruitment weekly aides in keeping participants and recruiting new ones.

Evaluate and document strategies:

  •  Track number of participants enrolled in a defined time period as a result of each strategy.
    • Track the number of engagement from each strategy (Social media platforms, vs in-person recruitment).
  • Maintain screening/enrollment log forms with attribution to specific strategy and reasons for ineligibility, or non-enrollment.
  • Calculate cost of enrollment per participant.
  • Survey of participants’ opinions re: strengths and weaknesses of strategies Track participant withdrawals and reasons for withdrawal.
  • Rapidly implement modified or alternative plans if recruitment is lagging

During the planning process:

  • Review inclusion and exclusion criteria
  • Consider burden on participants.  Level of burden will vary depending on your participants demographics: e.g. travel far distance to site, transportation and parking, access to and use of technology.
  • Provide adequate incentives throughout the duration of the study.
  • Prioritize developing a culture of respect between the participants and research team.
  • Keep consistency in mind for interactions and communications with participants.
    • Send reminder messages to prevent no-shows.
    • Take notes on family, hobbies etc, to show a genuine interest in the participant’s life.
    • If someone seems lost-to-follow-up, consider other forms of communication indicated on the locator form. Perhaps a home visit may be in order, if your outreach team has the ability/capacity.
    • Share study-related findings, when available and appropriate. People want to know what they are contributing to society.
  • Include staff members that represent the study population.
  • Budget for adequate training and logistical support for study staff.
    • Weekly/monthly staff meetings to discuss what is working and what is not
    • Creating a fair and feasible staff calendar to prevent burnout among staff. E.g google calendar.
    • Regularly scheduled meetings with PI to discuss role delegation

Updated systematic review identifies substantial number of retention strategies: using more strategies retains more study participants

Effective Strategies for Patient Recruitment and Retention Beth Harper, BS, MBA President, Clinical Performance Partners, Inc.