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Hi Colleagues
Great thoughts on retention , however we speak of retention because participants are already in the study and understood the pros and cons and ICF is an on-going process to mitigate any misconceptions or any clarity from participants. Participants lives changes like ours and the point of retention is to work around new situations that can occur such as relocation, new employment, college, social harms and new information on research or negative publicity on research etc. The role of retention is broader than participants but issues that can affect study outcomes.
Thanks
Lucky -
Retention of study participant goes currently with the entry phase activities conducted before a trial commences, entry phase goes a long way in making sure that participants are not only aware of the benefits but also perceived risk and this can be carried out through context of HIV Research literacy of community stakeholders.
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As we try various ways of trying to ensure retention in trials, we need to do this recognizing that our actions are not tantamount to coercion and are not exerting undue influence to study participants especially those in the control arm and equally those in the intervention. This is particularly so for operations research kind of trials which can be significantly affected by attempts by researchers to have participants in the study. So, my key word is , we can try whatever we can but we must be clear that we are not in any way exerting influence for participants to remain in the study because of our retention plans. Lets create conditions that are the same level as standard of care.
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Gonzalo. Thanks. I quite agree with your submission. Now that I have GPP exposure, our previous error of under budgetting for advocacy/site preparation will not longer exist. As issues regarding participants retention in a trial require extra funding for activities that will avert barriers to their engagement and retention like our MSM which we recruit by snowballing. Ela, Lucky and Marks. Thanks. Your submission are also very useful.
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Lots of good points here. I do think that retention is a function of research site operation. Those I trust say the key word is relationships. This comes down to valuing people as people, not just as research “subjects” (I prefer the term participant.) This can look different in different places but comes down to a lot of common sense things like making participation easy and stress free, being as flexible as possible, demonstrating genuine concern for participants, and thanking them repeatedly. One thing I think our site has found successful is not having a hard line between recruiting staff and study staff. An effort is made to allow participants to maintain a personal relationship with the recruiters, even though they are not performing study functions.
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Hello Everyone
I also agree with you Joyce and Phumeza, retention it start from the community engagement and you should understand the community you are working at and informed consent is the most important thing because if the participant did not understand the information of the study at first but if the participants have enough time to go through the informed consent it where they get to understand the study better.
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Hello everyone. In addition to all the relevant things you had mention, I think it is important to highlight that different communities may need different engagement strategies. For instance, we had a pretty good experience implementing a Health Tutors Program for one of the studies here in Perú, to provide a closer approach an assistance for MSM and transgender people. As a result of this approach, we were able no only to realise that this populations face unique and harder barriers for their engagement, but also to help them to overcome those barriers in order to achieve a better engagement, and it worked.
The link with the community and the CBOs are also important, because it is the way the clinics and institutes have for demonstrate their commitment with the development of the vulnerable populations. To sum up: The better quality of live, the better levels of engagement.
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Hello fellow Learners,
My contribution on participart retention is that the key factor is at the recruitment stage.
There are a number of items that should be taken very serious at recruitment stage;
1. Study information-make sure your participant understand what they are getting into and have volunterily accepted to take part in the study.
2. Let your participant understand what will be required of them and how long will they be required.
3. Get enought and verified locatotor information. e.g, if you get unverified phone number or address, you will only discover that the phone number or address are wrong or not valid at the point when you need this participant and you might not have any other way to locate your particular participant.
4. Always update your locater information
5. Involve people who are familiar with the area of your study,These and other related strategies like marking the location of your participant with a GPS.
Bamidele, hope these would add up to what you have.
Thank you
Isaac
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Thanks Phumeza, your point was very true. We experienced how important timing and local translation of informed could be in a setting where the literacy level among women in our recent malaria clinical trial in north-Central Nigeria. Although this slowed our enrollment drive, the retention was satisfactory. (though not 100%)
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I agree with you Joyce on that one, it start from the community engagement. we need to get the buy in of the community first and that will illiminate the hear say in the community as it affect the participants retention. 2 the screening visit is very important, that informed consent process determines our retention at the end of the day. if we give participants enough time to go through the informed consent and understand what is the study all about before agreeing to join then they know axactely what they are agreeing into.
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Rentetion should start right at community engagement as the message that is given in the first place should be consistent. The participants before recruitment have the right to know everything about the study so that they can make an informed decision of wheter to join the study or not. Once they get correct information at the begining, retention will not be a problem in their study participation.
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Most research participants are recruited from standard of healthcare facilities outside of the site where the research is conducted, so developing relationships with the staff at those facilities is also essential in participant retention. Keeping them informed of the study, ( provided the information is not confidential) and also informing them of participants well being on the study. This kind of collaboration also makes it easy to access medical records from these outside facilities should the need arise, making it easy to complete SAE reports, etc
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Jessica, I really gained from your perspective of identifying issues that could come up in the course of engaging study participants in a clinical trial and being able to address them satisfactorily. thanks Kenneth for bringing up the importance of information, communication and meeting expectations of trial participants. Lucky and Mahesh, your points are also noted. I quite agree with the need to have a mechanism of operation (like an SOP), but a flexible one, when engaging trial participants.
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Hello colleagues,
In my own thinking, I feel being frank and open regarding the risks and benefits of the research in all the interactions with the stakeholders and would be participants from the start of the engagement till the implementing stage will go a long way in enhancing participants stay in a study.
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Dear Colleagues
I concur with all responses because their spot on. The retention starts at the time of recruitment and more over it is important we should rush potential participants for screening but give them time described as cool-off and follow-u with a phone call for information session at site. in order to retain participants in study there are many process however telephoning them at least three or five days before visit so that we get to know the participants situation before hand and see how can we help them. what is most important is to have an Standard Operating Procedures (SOP) that guides everyone with same message. Also is important to have a dedicated person to manage it however is team effort from retention officer to all trial staff.
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I think it all begins at the recruitment level.What exactly are we telling these participants?Participants need to know what exactly they are getting themselves into when it comes to Clinical trials.We ought to give them enough study information so that they willfully enroll.short of this,we are likely to attract individuals whose expectations we may fail to satisfy and surely they will drop out of the study.
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Hi Everyone!
Great conversations happening already! This is something that we will discuss a lot throughout the course. Stakeholder engagement is not about recruitment or retention in a trial. However, a sign of good stakeholder engagement is enrollment numbers.
Bamidele- what are the issues participants are facing? Are you enrolling a key population so discrimination or stigma is an issue? Or is the site itself difficult to access? What about the community’s perception of research? All of these and more will factor into a participants ability and desire to stay enrolled in a trial.
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To me, it begins with being cordial, respectful and understanding. It includes informing the participant before they join a study about the realities of participating in a clinical trial, even if it means running the risk that the participant will decide that joining the study is not a good idea for them.
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