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Stakeholder engagement may not be at the same levels for different sites but it is there. The challenge that we are faced with is how to ensure that it is practiced at the right time (pre-protocol implementation) as part of review process so that issues are ironed out before the protocol is approved and implemented, and also to ensure that this is standard practice across the board. I also want to see more sponsor engagement as opposed to the once off engagement that we experienced at our site with the P1104 study that is being conducted at our site. Problems were discovered and it was back to the drawing board but had interaction taken place the first time this would not have been the case
Interesting topic with different perspectives. Firstly different strokes for different folks, so how we engage individuals matters. Some may not be open to one on one discussion so may not say much at a forum of this nature, however the same individual may be very good at putting pen to paper and if given the platform could present very good feedback. This is one of the methods we encourage at our site, not just from CAB members or stakeholders but all who are interested and this can include study participants. What keeps this productive is that it is followed up regularly and communication is exercised. Keeping people informed at all times makes good dialogue between parties and encourages interaction
Bernice How often are questionnaires used at your site. And I am assuming that they are site specific?
There is no substitute for community representation, The groups may have different names but there principal is the same: they are stakeholders from the community who represent the larger community. What we need to be aware of is how well this smaller group is representative of the latter. It would be pointless to have stakeholders who do not represent the bulk of the local community yet speak on their behalf. I must say I am impressed by CABS, because their diversity is such that discussions are so robust and motivate people to want to keep on attending. I sometimes feel bad when a meeting has to be cancelled because members are so eager to attend.
I am grateful for this training because it broadens my horizon. Bernice and Sherri you raise another good point and that is about inclusion of adolescents in our CABS because transition is part of training, hence transition from adolescents to adults is important for the strengthening of our CABS.
Our site organises workshops outside of the normal scheduled routine if there is a need for such. Some discussions may be of such that it cannot wait for the next meeting. We aim to be more visible in the communities so these forums are very helpful as Ella has also mentioned.
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
My sentiments exactly Moses. I am catching up after a bit of a glitch. I find this interaction very educational and informative
CAB members are lay persons from our different communities. They are not scientists so it is crucial that we make the feel that their contribution to the research is equally valuable and appreciated. Yes training is essential and must be done but also let them identify what their training needs are in alignment with the research. I feel that it is also important to consider the different literacy levels and work at ways of bridging such gaps so that training can be effective and enjoyable to all participants.
To what level is the line drawn when it comes to community involvement in recruitment and avoid it becoming ‘conflict of interest’ ?
I am glad that this question has been raised, because some of our CAB members confuse GCP and GPP to be one and the same thing there is a distinction between the two that needs to be clarified among the stakeholders and this course will provide that platform as far as I am concerned. GPP gives a more clear outline of stakeholder involvement whereas GCP is somewhat restricted to site staff only in most cases.
