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Hi Kathrine,
The staffing depends on the size of the community. We have at our research centre a community team of 3 staff members, 1 CLO and 2 Recruiters, but when we have big activities the entire research team helps; doctors, nurses, counsellors, etc. Some news on research just has to come from a more educated staff member, like a doctor. And at the end all staff members are responsible for recruitment and retention, so even if the Retention Officer is not able to reach a participant, but she’s a neighbour of a colleague, the colleague can make an effort to get hold of the participant as well!
For us it’s important that most of the staff (especially the community team) is coming from the area, as they know best how things work around here.
At the end, the community team should have an excellent relationship with stakeholders and CAG-members or other stakeholders can help as well with hosting events or setting up community dialogue sessions. Our sponsor even decided to hire 3 advocacy groups in the community, who organise events where the community team can go to present on the study. This is a nice booster as well for small organisations in the community.
I wish you all the best and hope you’ll get enough funding for a strong community team for your research, as it’s not a task you can easily combine with the clinical flow to obtain data…
All the best!
We have learned during this course the importance of having stakeholders involved in the trial from the start up to the end. When we started with the clinical trial at our Research Centre, we weren’t aware of the importance of stakeholders during the recruitment stage and only involved community stakeholders later during the trial. In the future we’ll engage with stakeholders from the beginning! Stakeholder engagement is a continuous process and approaches should be applicable for the different groups.
The GPP course was very relevant for us as it showed us that we’re already doing many things, without even being aware of GPP and we’ve extended our knowledge on stakeholder engagement. Most of the modules showed examples of prevention studies, which was very relevant for our research site.
We host continuous meetings and events during the trial, on which we update the community on the ongoing trial. Different kind of events are hosted to reach a broader public, e.g. fun-walks, soccer tournaments, community group discussions, events linked to public holiday’s (World AIDS Day, Human Right’s Day, Women’s Day etc.), events in cooperation with other organizations, like the Department of Health. We also share news about the trial via media, e.g. Facebook and local radio station.
After a trial we continue with the meetings and events to inform the community on the results of the trial and the way forward. Media is used on local and national level. The research centre maintains the social networks build up for future trials.
The research team could visit the local nightclub and inform the club-owner to provide an information session on the research. The MSM advocacy group could be involved in this process. An event could be organised in the local nightclub or in the area whereby information is provided on the research to educate the community on the protocol and reduce stigmatization. Social harms should be reported to participants who were attacked at the local nightclub and refer them to appropriate services, like a social worker and health care providers. A case should be reported at the police station.
This could have been prevented if the research centre had involved stakeholders in the community, like a MSM advocacy group and legal rights organizations. Awareness should have been created before stigma arises. Referral systems should be in place before the start of the trial and parties should be informed on the trial.
What implications did the lack of inclusion of clean needles in the prevention package have on trial results?
It created distrust from stakeholders and advocates in the trial outcomes. “The lack of resolution left a rift between civil society and research entities, with uncertainty about stakeholder support for future steps with PrEP research and potential rollout in Thailand”. Future trials might be affected by this distrust between stakeholders and researchers.
How can researchers engage stakeholders to better negotiate comprehensive prevention packages tailored to the needs of diverse subgroups?
The research team should engage with stakeholders from the beginning of the trial and share goals and objectives. When the research team was facing difficulties, due to changes by the government in the provision of clean needles, the team should have communicated this to stakeholders and ask for advise on how to deal with these difficulties. Continuous consultation and communication is critical for the continuation of the trial and rollout. Stakeholders’ opinions should have been included when disseminating results, to create trust from stakeholders for cooperation in future trials and follow-on studies.
Kind regards,
Ndlovu Research Centre team
We have experienced this at our trial site. The trial was already busy and our Research Centre joined later to reach the target of participants, so the protocol was already finalised.
We organised a protocol training for stakeholders, whereby we went step by step through the protocol and whereby stakeholders were able to ask questions or provide feedback on the trial. We’ve used their expertise for setting up a Recruitment, Adherence and Retention Plan. Obtained information was shared with the sponsor.
Community sessions were organised to share information on the trial with other relevant stakeholders to gain support for the study.
We’re looking forward to set-up a session with stakeholders in the future to discuss a new protocol as explained in the GPP module of this week.
We see social media and online communication as beneficial to the research conducted at our site. We never had negative posts on the study, and only used the local radio station to spread the news in the community and used our organization’s Facebook page to inform on events and activities. If the research site is proactive in spreading information on the study, the chance becomes smaller that incorrect or negative messages are spread online. Participants created together a what’s app group and invited research team members to discuss issues and research staff members posted comments, when there was a need for clarification. Also during participant adherence events participants had the opportunity to discuss concerns/issues on the study, as well for community members during CAG meetings, stakeholder meetings and community dialogue sessions.
We assessed the stakeholders on importance for the research trial by checking their interest and influence, as described in module 4. Some stakeholders are very interested, but won’t have a big influence on the research itself or on helping with recruitment, but we felt we were responsible to keep them informed on the trial, as they were so interested, they are still the biggest group of stakeholders within our community. We also noted that there are some influential stakeholders, that weren’t interested, so by keeping them up to date when necessary, we hope to gain their interest for the study, but even now that we’ve disseminated the results of the clinical trial conducted, it’s hard to get their full attention. I hope these stakeholders become more interactive once the product is licensed.
To determine the stakeholder groups and keep them informed, we host community meetings and events. We have a Community Advisory Group who helps us for this research and 3 Advocacy Groups that help with organizing events and dialogues in the community. We also have 2 Participant Adherence Events per month, whereby participants provide feedback on the research.
Looking forward to hear stories from others!
A map of the community was put on the table and we drew lines to indicate which part of the community would be involved in the research, as our community is quite big.
Before the trial started, the research team looked for active community organizations and visited local clinics, NGO’s, churches, schools and the Chief of the community. The research that we have conducted, was one of the first researches in our community. As we experienced that we’re working in a research-naïve setting, we first had to focus on research itself, before we could explain the planned trial. Within the community we held community discussions/meetings, whereby research was explained and during these meetings we looked for support and created an understanding among community members.
From key stakeholders in the community, who were very interested in the study, we created a Community Advisory Group (CAG), who helped us further in identifying stakeholders and community organizations and set up more activities within the community, where we could explain research and the planned trial. From other key stakeholders that showed great interest we also created a male involvement group, a key stakeholder group (who helps organizing events in the community) and other partner groups (who host events, whereby the research team is invited to present about the research).
These initial steps helped us a lot in starting the trial, recruiting participants and now by disseminating the results. It’s good to have support from the community!
Stakeholders could have been more involved in the initial phases of the clinical trial conducted within our community. This had effect on the recruitment, as we struggled to find participants. We noticed that the community was not familiar with research and decided to have information sessions whereby research was explained and the specific research protocol that we were going to conduct. When another research was initiated by our company, recruitment became easier, as the community was no longer doubtful about research and had a better understanding of what it means to participate in a research.
Kind regards, The Ndlovu Research Centre team
There is a good understanding among the Ndlovu Research Centre team members on the value of GPP and stakeholder engagement. Although not everybody links the principles to GPP, they follow the guidelines indirectly. The entire team is involved in organizing continuous events, meetings and information sessions for participants and the community and explaining the trial to community stakeholders, under guidance of the Community Team.
Hi Isaac,
At our Research Centre, we’ve tried to create a CAB/CAG that represents the community, by involving different gender, age, organizations, professions, etc. But a CAB/CAG can only be a good representative of the community, when it’s created in such a way. Important is as well that the CAB/CAG should be an active group.
Kind regards,
Ndlovu Care Group Research Team
Hi all!
We’re the Ndlovu Care Group Research Centre Team from Dennilton, Limpopo, South Africa. Currently we’re conducting the IPM027 Ring-Study at our site.
We’re looking forward to get a better understanding of GPP and implement the principles at our Research Centre!
All the best,
Robert, Selinah, Herbert, Milliah, Johannah, Suzan, Thuthukile, Masello, Cedric, Charlotte, Ndoda, Tholakele, Ambros, Hellen, Mabel and Larissa
