Patient identification and recruitment
Unclear how to define eligibility when patient and medical record provide conflicting or inadequate information (e.g., functional status, when first diagnosed with disease) Participants and researchers define inclusion criteria differently, e.g., what defines “heart failure” or cognitively intact? Questions about whether caregiver should be included, especially when patient and caregiver do not get along or have drastically different views of situation Gatekeeping by clinicians or recruitment personnel, resulting in potential selection bias Clinicians insist on being informed of research conducted with patients in their clinic and must buy- in and not be disrupted by the research Participant refusal to participate due to mistrust, lack of perceived benefit, or perceived burden Recruiting done directly by researchers requires special skills, major time demands
|
Logstical issues
Participant agrees to participate, but proves difficult to reach or schedule, sometimes rendering participant ineligible by the time appointment is scheduled Participant (or researcher) forgets or needs to reschedule appointment Participant too sick to participate or was admitted to the hospital, requiring rescheduling or rendering participant ineligible Participant lives or moves far away from research center, rendering them ineligible or increasing burden of data collection Difficulties with transportation to or navigation within research center Travel time for researchers to rural homes in various communities Participant transferred to another facility during study without informing researcher Participant died after initial interview or recruitment Researcher arrives at home but participant absent, forgot about appointment, changes their mind, or too busy to participate Data collection very time-consuming
|
Maintaining participant privacy and confidentiality
Challenges of complying with federal US (e.g., HIPAA) requirements Challenges of navigating local (e.g., institutional review board, clinic) requirements Aliases used but not always remembered by participant Lack of private area in clinic to interview participant Family members, friends, bystanders, or visitors present during interviews
|
Conflicts with compensation
Displeasure with delay between participation and compensation or form of payment Unwillingness to provide social security number for compensation record keeping Mailed check cannot be retrieved or cashed (e.g., if homebound or not using banking institution) Compensation too low for some, very high and potentially coercive for others Participant expects treatment, information, or help in return for participation
|
