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. 2020 Feb 13;4(5):431–436. doi: 10.1017/cts.2020.12

Table 2.

Discussion themes and summary of findings

Theme Sub-theme Definition Summary of findings Solutions
Motivation and facilitators Self-interest/individual experience Research helps participant directly. Experience with the condition or friend/family experience with the condition
  • Benefitting self

  • Research improves longevity and quality of life

  • Provide enough information up front for potential subjects to understand and recognize the potential benefits to themselves and others

Helping others/society Hopefulness/anticipation about participation benefitting the next generation, helping to find a cure or treatment, or deeper understanding of a condition or pathology
  • Benefitting future generations

  • Helping science

Participant attractors Factors leading to research participation and sustained engagement; favorable aspects of the research experience, and reasons for involvement
  • Learning about research

  • Research transparency

  • Financial compensation

  • Social engagement

Money How researchers or research institutions made participating in research easier, more convenient, or more desirable because of providing compensation
  • Cash compensation

  • Travel reimbursement

  • Hotel accommodations

  • Gift cards and fuel cards

  • Ensure compensation for travel and other expenses

  • Provide a small honorarium

Perceptions of research Lack of trust in research Factors influencing lack of trust in research, the research team and/or host facility
  • Pharmaceutical/industry funding

  • Lack of familiarity with researcher/institution

  • Beliefs about unethical practices

  • Provide enough information for potential participants to fully understand who is supporting the study and how study funding might impact results

Trust in research Factors influencing trust in research, the research team and/or host facility
  • Familiarity with the institution

  • Vetting research through family in healthcare field

  • Belief in God’s hand in medical research

Research importance Factors regarding research importance that influence participation
  • Broadens pool of people testing treatments for wider efficacy

Barriers to research participation Barriers – general Factors, logistics, situations that made participating in research more difficult, including concerns about participation
  • Mistrust in industry-funded research

  • Privacy and confidentiality

  • Time commitment/busy lives

  • Maximize transparency and discuss how study funding might impact results.

  • Explain the processes in place to ensure privacy and confidentiality

Transportation Getting to and from the research location. Includes navigation – how to find the location
  • Challenging to travel to cities to research locations

  • Desired study-provided assistance

  • Come to rural locations, meet seniors where they gather

  • Provide town car/bus