Welcome to lesson eight, where we'll be talking about person-centered retention. Here's a quote we really like. "We view the recruitment and retention of racial and ethnic minorities as two critical components of the research process, with retention being a distinct phase that begins during recruitment when strong relationships can be established." As you can see from this quote, we often overlook the importance of retention when we think about recruitment. We need to look at the two activities as inextricably related, with one building on another. It means that we need to provide adequate support to ensure compliance and retention. It's important to remember what can happen when people drop out of a study, which can be as high as 30 percent. One by one adds up and soon we have enough people who have dropped out to make a real difference to our study's results. Impacting the people whom the research ultimately aims to affect. Now, we're going to discuss the challenges surrounding clinical trial retention in general, and for under represented populations in particular. The issues listed here could become serious retention problems. We also need to pay attention to the individual needs of our participants with relation to specific demands of the research protocol. Careful planning and proactive strategies are needed. The most successful research studies have often found ways to screen for these problems at each visit, helping to anticipate potential problems before they start. Some literature that suggests that retention is more problematic with minority populations, and consequently threatened the generalizability of study results. Here's what participants say motivated them to stay on a study. Sticking with the commitment, positive reaction to the treatment, the interactions, the relationship with study staff, free treatments, and additional information about one's own health condition. So, what potential approaches appear to be effective? One study found that six approaches having a particularly high impact on retention rates for people with low incomes. They were incentives, having a personal approach, having a phone line just for study participants, project name and logos, used on promotional materials, follow-up scheduling at convenient times, and frequent contact. The approaches listed on this slide have been shown or reported by researchers to be culturally competent strategies for their retention of participants from racial and ethnic minority groups. What's important to note is that multiple variant strategies, combining incentives and flexibility, with community-based activities makes the most difference in retention for these groups. Studies with the highest retention rates use a combination of strategies. Studies with lower retention rates use fewer strategies than those studies with higher retention rates. Another paper reporting results of semi-structured interviews with personel of 19 studies confirm what we may already know intuitively. That to increase retention overall using multiple strategies, providing staff time for numerous approaches to contact, allowing staff ability to refine approaches in real time, and learning what our participants need will make the greatest impact on retention. A well-functioning research team that's organized, persistent, adaptable, and innovative can also make a real difference. Of course, once again, this means that staff time needs to be devoted to retention. These responsibilities shouldn't be simply tacked on to other responsibilities. A team approach could be a full-time staff member dedicated to implementing retention strategies, and focus on optimizing participant follow-up, or allocate a specific number of participants to one team member, who serves as a study's primary point of contact for that group of participants. Selecting appropriate individuals with responsibility for participant contact, and providing intensive training and support on study protocols, including retention techniques is critically important. Here's an example of promising strategies used to minimize dropouts for one large study reaching black and white women. This persistence helped the team successfully retain a high proportion of participants. We can see, again, how well-functioning research team that, again, is organized, can make a real difference in retention. Most successful retention efforts have shown that research staff need to be specialized, organized, and persistent, and communicate well. One last point about retention is communication once a study has ended, and the importance of acknowledgment about participation, and the importance of research findings. A 2009 study found that most patients wanted to be informed about the research findings or else would not participate in future clinical trials. I just want them to have a comprehensive understanding of what the project entails. What happens at the beginning, what happens in the middle, and what happens at the end. It's more than just a time commitment. How will I know what happened with your study findings? Will I be contacted? Will I be notified? Will I receive an email that says the study has been completed and here's the paper that was written as a result of it, or here's a new protocol that was developed, or what did you find? So, I think it's important for people to know, how will I receive that information? I have never heard back from any of the studies my son has been involved in and I would love to. I would love to see what came of it. That's also another reason why a lot of minorities don't do the studies, is because they don't want to do- they never hear the results. It's like I put my child's blood out here, and I don't know what has happened to it. When a study ends, most trial participants feel they're no longer valued by researchers. Survey research shows that on average, over 90 percent of study participants never learn about the specific results from the study staff or the research sponsor. More and more study sites and sponsors are exploring ways to provide this information to participants. It is one important way that person-centered care goes from recruitment, to retention, and beyond.
