Study participant retention in community engaement

In my opinion when it comes to retention, no one method fits all, you have to use different startegies for different communities and different age groups. But always be open and transparent about any new information that is learned during the trail with your trail participants.

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.

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.

Hi Mark

I agree with regards to relationship build is key to participants retention however this function falls with site operation unless you can explain what did you mean with
” not function of research site operation”

Thanks
Lucky

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.

Good patient paticipation is a friendly enviroment.
follow up calls

home visits
communication with participants.

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.

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.

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

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.

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.

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

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.

Dear colleagues,

In my response good communication, knowledge about trial and  assurance about completion of  commitment will enhance ability and desire of participants to stay enrolled in a trial.

Mahesh

dear Colleauges
in my response on line two I meant we should not rush potential participants and make follow-up call and this waiting period is called cool-off

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.

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.

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.

Pre-knowledge of what is at stake is relevant. This will help the study participant to be prepared for any circumstance. Integrity and Sincerity are other attributes necessary.
Bernice

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.