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Thank for this Question. For us in our trial site Lagos under the RV368 TRUST Study for MSMs which is still on-going. We have been carrying out series of activities during the trial to help sustain with MSM community stakeholders and the broader stakeholders.
We use the quarterly CAB meetings to share best practices, on-going challenges and find probable solutions at interval,
We also host the monthly support group meetings for those on the study found to be positive, in this meeting we build great relationship with our clients by building their skills in community capacity, PHDP and other forms prevention options to help improve the TRUST Study.
We also conduct advocacy activities in conjunction with MSM stakeholders to meet state actors and non state actors to help promote the gains of the study at community level.
We also make of mobitainment and some forms of edutainment to share information of the trial’s on-going activities in lieu with phone calls tracking.
Lastly we follow up too with community dialogue events through World AIDS Day, International Day Against Homophobia IDAHO,etc
Currently, we are building on another parameter of sharing best practices with the continuous sustaining of our HIV Research Literacy activity. While working toward forming a HIV literacy GROUP amongst MSM community stakeholders and trial participants.
Also I will love to extend this capacity more a year, I want to make it a routine and possibly push an advocacy to include and reflect GPP tenets in practical terms for all Nigeria in-country research protocol.
I learnt so much about GPP. At first it was a totally new experience. GPP gave me the opportunity to rech to my target community openly on research literacy. GPP made to know that the essence of stakeholder engagement. I first went through the outline at first. and later I learnt one new of converting what io have learnt into action. That is the high point of new things I have learnt. I will be using the next 12 months to educate my target community on research literacy, GPP and the continuous need for stake holder engagement all a trial life cycle.
For Example, in the TRUST STUDY RV368 for MSMs going on in Lagos, Nigeria, we had such issues. We had very notorious and popular market place where MSMs do pass or go through before they access the trial site within the Local government area of the trial site. We found out that when the trial started many MSMs passing through the market arena were sometimes traced by onlookers and touts, hoodlums and other homophobic persons to the trial site and tagged it a Gay recruitment centre, while some persons even pretended to be gay to be able to have access and recruitment in to the trial site for purpose of further investigation. As a result many were attacked and beaten along the road or molested before reaching the trial site and some who were under standard HIV Care package could come to access their drugs as a result of fear.
What was done to avert this was to get quarterly meeting of a broader stakeholders, just as it was outlined, we brought message on the for a research on general HIV terms not outlining who the specific beneficiaries were so as to reduce homophobes and their continued activities. Some of the stakeholders reached out includes the POLICE, Local Action Committee on AIDS in the area, Market Leaders, Community Development Area Representatives . Services at the clinical trial site expanded to other target groups in the area of general HIV prevention and condom distribution and HIV Prevention education.
We also carried out community awareness education activities in the area of dressing and grooming for our MSM Trial participants when outside the trial premises. We also developed many IEC materials for distribution within the area and engaged general population in HIV Testing and Treatment services in the area to further dispel rumor of the Clinical trial site being a GAY RECRUITMENT CENTRE. I guess some these real situation experiences is similar to what Anne just shed light on .
I do agree with Anthonia and Bamidele, they have really spoken my mind concerning to approach such issues involving the MSM community during commencement of research activities.
Well for my context developing questionnaires/surveys, monthly FGDs and quarterly de-briefing meeetings and interphase with community stakeholders too is one mechanism I buy into.
Yes caroline, protocol development and review process is an opportunity for community members Reps and CAB to build their capacity HIV Research literacy and in work of the Nigeria HIV Vaccine and Microbicide Advocacy Society, we developed a simple tool outlining some key concept of HIV Research literacy in colourful, pictorial illustrations during any activity that calls for such process to help enhance GPP and full involvement of a review in a protocol for research.
When a protocol gets sent in final form to me, I try to review with members of the CAB, Representatives of the key target population for the trial to be ascertain the level of community engagement outlined in the protocol.
I will also try to break down explanation of the trial protocol for the CAB and representative of the Trial community for them in simple terms to understand what entails the document, process of informed consent, process of trial result dissemination, process of which standard of care package is outlined and process of addressing human rights violations too.All in the team must carefully study the document and raise questions and recommendation that will enhance good GPP and entrench it in the process of the trial and after.
I will agree with Antonia, the trial lacked ethical obligation, standard of care packages was not included, process of recruiting participants were vague and not properly informed, stakeholder engagement in the process was not considered , there was no informed process.
As a drug user, I believe the NSP as a formal and global standard of care package was not included and date gotten from such research cannot be deemed accurate especially when PWID research participants are placed on placebo.
Secondly , researchers need to support the development, input of stakeholders especially CAB in any research process, A CAB need to get an informed consent on the process which a research will go,objectives, procedures, goal and explanation of risk and benefit to participants (PWID Participants) Need to engage PWID led network or organization, PLHIV Networks , Media and policy makers and all related stakeholders and allies before a research kick on. The process should also be sustained during the research process on a quarterly basis so address power dynamics/ imbalances that can threaten the continuation of a research and other factors coming to bear.
The case of study in THAILAND is one example we must educate our colleagues and our team about so as to avoid such occurrence that can question the efficacy of a data and result of a trial
For the TRUST STUDY, my team is discussing with the CAB currently, just as I said we just developing this norm. And we are taking a close inventory into media outlets or communications agency that can be of help, but we however, need to sensitize them before we allow them have access to information. In Nigeria can be a friend a t the same time they can be compromised. But we are in the process of adopting an effective communication plan process by reaching out to internet bloggers who we know are members of the MSM community that will help safe guard information as an alternative option.
Currently, we have started inviting MSM friendly communication agencies who have MSM community members working as influential staffs, We have identified internet bloggers and also decided to create a WAS APP group for the TRUST STUDY group for MSM. But however, I agree with Bamidele that information technology also improves trial communication planning and engagement strategies with stakeholders to effectively disseminate research information but it is just taking its stead gradually in the Nigerian terrain. It has both beneficial and harmful potential if not well tailored and managed with respect to the MSM community and the TRUST STUDY Research for MSM in Nigeria.
But , however information technology is necessary and my team has been taking a deep look into how to make it well tailored to bring about effectiveness and send the right information about the ongoing research.
We try to have an overview of a trial. The overview of a trial will help to identify an appropriate stakeholder at each stage or phase of a trial. The assessment is done through various ways, such as mapping, focus groups, interviews and conversations with key informants and of course, consultations with the CAB. At each phase of a study trial there are always stakeholders who will be more important than others depending on the agenda of a trial, objectives and goals which can result to power and influence imbalances during a research trial process. To bring about success , we do find an appropriate mechanism to synergize.
After stakeholder selection is done, in my case we usually have meetings separately to avoid confusion or misunderstanding among different classes of categories of stakeholders. The groups may be categorized as follows for example we can have MSM Led organizations/MSM Friendly organizations, Human Rights groups /Research Advocacy groups/ media groups and finally the (CAB)
The aim of this arrangement is to introduce the study to all the identified stakeholders first and then then come down to who will be directly involved through out the implementation of the study.We should agree that depending on a phase and agenda of a trial, other stakeholders may be more relevant than the other. This also means that their engagement may be different from other identified stakeholders to another depending on their knowledge, influence, and regard in the general stakeholders community and also their will to take part in the specified trial.
Dear Colleague, thanks for this question . In my concise thought , GPP does not limit its self to any trial size or phase. GPP should be an ongoing process from the Initial phase, Intensive phase and conclusive phase of a research. GPP should not only be in principle but should be an entrenched process in a trial size or location.
For me back here in lagos Nigeria, every formative research carried involves community key opinion leaders in the design , administering of research activities, the only challenge that comes on along is the dissemination of formative research results through the community stakeholders approval. This is one challenge I do forsee in my context. But all there is some level to great extent of involving community stakeholders especially when it comes with research with MSMs or PWIDs or FSWs. there is a level of stakeholder consultation activities
