BuddyBoss Team
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The research team understand that there is no study that has to take place without involving the stakeholders, that is why we involve them on the protocol review, ICF review and Regular updates therefore with that involvement stakeholders ensure that our communities participate in our studies.
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As has been shared by some others in this forum, it is a bit early for me to give an educated account on how social media and online communication has affected communication planning and engagement strategies with stakeholders in the context of GPP. Online communications have affected to some extent, but the social media platforms are foreseen to affect the scenario sooner.
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Determining the type of relationship sought with each stakeholder is done with several factors in mind. These include the goal of stakeholder engagement and specific objectives; expectations of the stakeholders and how they are aligned or may potentially be perceived to be in conflict with that of research team; learnings from past experiences of relationship with certain stakeholders or closely related ones; stakeholders’ roles as rights holders and duty bearers etc.
Determining the importance of involving one stakeholder versus another is a tough situation indeed. While there could be a tendency to consider that all stakeholders are equally important, substantive and practical considerations makes it imperative that some stakeholders are prioritized over others in certain situations and contexts. A stress is given to contexts, as the prioritization will have to account for each stakeholder group’s potential to influence and contribute, as well as the degree of possibility of getting affected with the trial, based on the particular context. In addition to the above, another factor that is considered is that of representation of sub-groups and sub-populations: so as to achieve a balance in representation inclusive of gender and geographical considerations.
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Unfortunately when we receive the protocol it already was in the final from. But I believe that other CABs were able to discuss it in a draft from.
We promote the protocol discussion, and we make sure that all CAB members have the opportunity to discuss and understand it. -
The team needs to have knowledge about harm reduction strategies and share that support to the participants.
The CAB and stakeholders should participate in the discussion of prevention packages for the participants, and put that theme inside of a government discussion. -
Clean disposable needles are necessary as part of the prevention package in such a study. this assists in working towards lessening exposure to HIV and other STI’s from using dirty needles. Not having clean needles, in a way sets back progress in the study and is unethical in trial conduct.
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We are very transparent with our aims and goals. we involve the CAB in all developments and they disseminate the information and updates within their communities so by the time we host roadshows and present our studies we already have feedback from the CAB and the communities they represent. this allows us to have relevant information for the community.
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In our site we ensure that we have monthly meetings with the CAB and all Study coordinators are required to provide feedback to all stakeholders with regards to their trial. The study coordinator then provides a report back to the Principal investigator. Minutes of all meetings with stakeholders are circulated within the team.
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When the protocol is sent to the trial site in the final form, it is critical that all study staff understands the protocol. A training session for trial staff should be conducted to allow for trial staff to be trained through all the aspects of the protocol. Trial staff, upon complition of the training, must sign to acknowledge the training of the protocol and to meet the requirement of regulatory documentation. It is also important that each trial site has a copy of the protocol which can be made available to trial staff as and when they need it.
Other stakeholder groups such as CAB should also be taken through the trial protocol. This can also be achived through training of workshops.
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When doing research with drug users one of the key components of the prevention package is the supply of disposable syringes. Failure to make it available makes the person susceptible to becoming infected not only with HIV, but with hepatitis C, as well.
The Thai government should think of dispensing syringes for drug users as a harm reduction policy. -
Its good that you have said that we imagine because in my country even thinking about homosexuality is a taboo. MSM are really stigmatized to the last dot. but back on the point to avoid this occurrence the community stakeholders , the CAB, the media they have to be involved from the word go. The religious leaders have to be informed as well because they also play a bigrolein research.the study team has to be prepared to provide regular pyscho social support to MSM becuse they gothrough alot of stigma and regular couselling is crucial.
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1. Lack of inclusion of clean needles in this trial meant that participants were exposed to more risks than for the trial to be beneficial to them. The fact remains that, it is a non-negotiable standard that must be met if we are to offer responsible HIV prevention options for people who are injecting drugs. However, lack of inclusion of clean needles in the prevention package has an ethical implication and the trial could compromise the outcome of trials. As stated in the GPP guidelines, “helping trial participants reduce their risk of acquiring HIV is a key ethical obligation of research teams”. The environment and hostility of government and the fact that drug use was illegal and even public campaigns were held to emphasize this point means that participants were not protected during the trial. The participants were exposed to more risk and the laws of the country in this regards were not supportive to them. This trial failed to meet the ethical obligation as providing clean needles and syringe is an evidence-based approach that effectively reduces the high risk for contracting HIV/AIDS.
2. How can researchers engage stakeholders to better negotiate comprehensive prevention packages tailored to the needs of diverse subgroups?
Researchers can engage stakeholders in negotiating for HIV prevention packages from the protocol development stage. Research teams should identify and meet with the relevant stakeholders during protocol development and negotiate for better comprehensive treatment packages and the stakeholders should be given a chance to identify the methods of prevention that could be included in the package and all the methods should be discussed in order to ensure that they will adhere all the national policies and GPP guidelines
The research team needs to identify stakeholders who have sufficient technical and research expertise and also an independent perspective on the research. The case in Thailand provides a unique example as it was Thailand law that prohibited the distribution of needles to inject illicit drugs. This actually suggests the importance of conducting stakeholder engagement activities, specifically national and broader stakeholders in the case of Thailand, before the implementation of the trial. -
Thank you Masunga for the detailed account from your experiences which is very useful. I can relate very well to the point of delayed participation or in some cases non-participation in online communication channels by stakeholders. I was wondering if your team has got a chance to look a bit deeper into the barriers for their participation with an objective to overcoming them? Are these barriers specific to “online” or are these barriers the same that is encountered in “face-to face” participation? If different and specific, perhaps measures could be considered and incorporated to bridge what some people refer to as the digital divide.
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Dear Philister,
Thanks for highlighting the importance of power imbalances that may be present among the stakeholders, as a factor to be considered in determining the nature of relationship with stakeholder. Allow me to share from a slightly different context where this was felt and addressed. The accountability for reasonableness (A4R) framework that was intended to improve fairness and legitimacy in healthcare related decision-making, inclusive of stakeholder engagement originally had four conditions. Later, a fifth condition on “empowerment” was proposed to address concerns similar to what you have raised here. I am quoting from a paper that describes this [Strengthening fairness, transparency and accountability in health care priority setting at district level in Tanzania, available at:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3211296/%5D
“… the findings underline the need to recognise and deal with power asymmetries among various actors in the priority-setting process. More attention needs to be paid to issues of difference and the challenges of inclusion. It was evident that while priority setting was meant to be participatory, this was not the case. In practice, most of the district health plans were products of a few members of the CHMT, with private partners and community bodies at best operating as a rubber stamp for decisions taken without their input. The findings suggest that simply establishing institutional arrangements of participatory planning, priority setting and governance–in the absence of prior awareness and without the strong capacity for exercising countervailing power against persisting ‘rules of the game’–will not result in greater responsiveness to community needs and priorities. Rather, the best-intentioned mechanisms for participatory planning and priority setting might simply be dominated by the local elite.
This study reinforces the findings of an earlier study in high-income countries that advocated the need to add the empowerment condition in the Accountability for Reasonableness framework (22). The empowerment condition requires that steps should be taken to optimise effective stakeholder participation and minimise the impact of power differences in decision making (22). In this case, empowerment of user committees and boards enables them to be pro-active, to suggest solutions to local authorities and to insist on decisions being made and implemented. One of the tools in empowering boards and committees is the provision of good information, more so if they are involved in its collection. Well-informed members of boards and committees will be in a better position to make sound and informed decisions, and to participate effectively in the implementation of priorities. Another way to empowerment could be to engage the committees and boards in identifying not only community needs but also the available local resources, and in working out acceptable solutions (23).”
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Hi Yumeng,
Thank you for this thorough response. The issues management plan is key–and one I should have included in my plan. I thought about media involvement as a way to counteract the myth that the trial site is a place where people train to become gay. I also thought this would further stigmatize participants and “out” them. However, with proper strategizing and connecting with community partners and allies, I’m sure an effective message would be created and helpful in this situation.