Introduction
There is a growing concern over the recruitment of participants into medical research programs as participation is very poor and the whole process is a challenge. The problems of recruitment are more evident in the urban African Americans who are considered a minority group in the US. The reduced and lack of participation by African Americans poses a challenge to the generalization of the findings as well as assessing how the research is useful to the African Americans. Strategies to increase participation have been impeded by the paucity of science to offer guidelines to researchers, the designs of research, the implementation process and assessment of recruitment process and retention tactics. The participant’s attitude concerning the trials and the investigator, and the beliefs about the advantages and dangers of involvement in research is still a key element for investigation. This paper investigates the reason for the low participation of urban African Americans and seeks to conceptualize these barriers and find ways to facilitate and participation and ensure retention of participants.
Barriers to Participation
There are few studies that have been done to assess the barriers to clinical trial participation and these studies underline the importance of attitude and perception of the clinical trials. The barriers to participation can be divided into two categories – the health-related and social barriers. One major social barrier is a lack of trust for the clinical trials and the investigators hence African Americans are likely to decline participation. However, when participation entails community-based organization and the use of insiders, participation is likely to increase. Studies have shown that the presence of an illness increased the readiness and motivation to take part in research but the presence of potentially fatal disease was the most serious barrier. Some patients also note that standard treatment worked better and hence they did not see the need to take part in testing new drugs. Another barrier for participation is time inconvenience and the location of the clinical trial. Basically, distance can be a problem and the daily routine of the potential participants may not blend well with the schedule of the trial hence causing the participants to back down.
Trust barrier is a major challenge because clinical trials are usually raw and participants are not sure of the end results of the study and do not trust what the researchers are doing and their intentions. Participants would not be willing to accept injections of substances that they were unsure of or the possible consequences. Rather they would prefer the current standard medication. Some even cite previous researches indicating that some participants developed diseases from such trials. There is also an element of minority discrimination and racism where the African Americans decline participants stating that they did not want to be used as guinea pigs to test harmful substances and this notion has spread to many of them that participation in clinical trials is something they dread.
Retention
To try and ensure more retention of participants and encourage participation, the investigators should make appropriate arrangements to compensate the participants for their time, distance and other costs so that participants would not be a burden to the participants. It’s obvious that if participation is costly, the participant may perceive that they are going at a loss for nothing and could easily opt-out. Uncertainty about trials can be cleared by referring to previous tests that the drug’s safety was tested on lab animals. Still, the trial can be stopped immediately if complications are noted and proper treatment administered.
There needs to be community public education concerning medical research so that people are aware of the research and its goals. However, this is still a major challenge because young and educated individuals offered the most resistance to participation. The researchers should also develop attractive benefits for participants to appetize them to participate. For instance, the participants can be given free medical access in the future because of their participation. This will entice many people to take part since before the health reforms health policy in America has been a challenge with many people underinsured or not insured at all.
Conclusion
It’s essential to create an efficient recruitment model and to retain participants in the trial so as to have meaningful clinical trials which can be generalized to the rest of the population. Reduction barriers and enhancing retention like having clinical meetings on weekends allow nurses to visit participants at home or at work can be arranged.
Reference List
Corbie-Smith, Giselle. “Attitude and Beliefs of African Americans towards Participation in Medical Research,” Journal of General Internal Medicine, 14, (1999): 537–546
Linden, Hannah, M., et al. “Attitudes towards Participation In breast Cancer Randomised Clinical Trials in the African American Community: A Focus Group Study,” Cancer Nursing, 30, (2007): 261-269
Russell, Kathleen, et al. “Barriers to Recruiting Urban African American Women into Research Studies in Community Settings,” Applied Nursing Research, Vol. 21, Issue 2, (2008): 90-97