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I didn’t know about GPP specifically as laid out by the UNAIDS and AVAC document before enrolling in this course but I was certainly aware about many its components that are generally promoted as part of ethical and good practices when conducting research. Coming from a funder’s perspective, I’ve now thought more about the role we can play in requiring our applicants and grantees to think more about how applying GPP can improve their studies in a more systematized way and how we as a funder can help ensure it actually happens and actively support and participate in the process as well. We don’t typically fund large trials but we do fund pilot interventions and while not all aspects of GPP are clearly applicable, I’m more curious about the community engagement component than I was before and how my organization can become more educated on the role of these stakeholders in the work we fund.
Mark, I really appreciate your insightful responses! Admittedly, I did not think about it as much as you did (I’m very behind and trying to catch up) but I think what you say about investigating these incidents more to determine whether they are study-related is spot on as is the suggestion to assess whether we anticipate that these kinds of incidents will be ongoing. I too hope the study sites are at more discreet locations that are multi-purpose/services so as not to inadvertently “out” trial participants.
The study team might respond to this incident by working with the CAB to re-launch (because I’m assuming there was some information about the trial disseminated at its inception) to publicize the goals of the trial, perhaps with an emphasis on the medical aspects and the potential benefits. Some “True” and “False” social media campaigns might also be helpful. This would be the time for the study team to refer to its issues mitigation plan in their trial communications strategy. It might also be helpful to reach out to local advocacy groups (in addition to CABs). Community stakeholders, especially MSM, should definitely have been part of efforts to inform the protocol before its launch. It’s best to try to have as much input on risk mitigation from the onset, especially CABs and advocacy groups.
This case study presents an especially challenging context for researchers who were stuck between being unable to provide what the IDU activists advocated for and needing to abide by strict government guidelines. However, the lack of inclusion of clean needles in this study calls into question how applicable (or “generalizable”) study results can be in real life situations, not to mention how useful will these results be if you never had complete buy-in from the very people you are hoping to help? I also think the researchers should probably have spent significant time negotiating with government officials to allow that component as part of their prevention package. Perhaps that is unrealistic, but they have a moral obligation to ensure that participation in their trial will not lead to adverse effects, in this case seroconversion. Obviously engagement with activists much earlier might have led to some more productive dialogue regarding possible solutions to including clean needles.
With regards to researchers better engaging stakeholders, I wonder if the researchers convened meetings to include all key stakeholders at once to discuss these issues in a forum-type environment versus one-on-one meetings. It wasn’t very clear from the information provided exactly how dialogue occurred. Perhaps serving as conveners/facilitators in a forum that included advocates (CSOs, community groups, etc) as well as government officials to work out a solution for this study that could have worked might have led to better negotiations that would have hopefully improved the design and ultimately the outcomes.
As a funder, I do not have direct experience with trials being affected by social media and online communication. However, there are clearly positive and negative potential outcomes for trials. In this day and age, it is wonderful to be able to share information relatively inexpensively and quickly to people located just about anywhere in the world. However, as we saw in the example from the module, it is also too easy to spread misinformation. This underscores the importance of having communications and issues management plans in place in anticipation of negative effects as well as to maximize the potential good that can come from these platforms. Additionally, I think that organizations are increasingly seeing the importance of having people on their study teams dedicated to communications, especially online communications, in order to track and pre-empt potentially damaging misleading information. This also demonstrates that these are important team members who have (or at least should!) a specialized skill set. Having a social media and online communications role on a team (if a trial size and funding allows, of course) can be very important and is more than merely posting online, which it may certainly be pre-conceived as such by those less familiar with the skills required. These tasks can be hugely beneficial for trials and to ensure that, much forward planning and appreciation of this role is required to maximize those would-be benefits.
Engaging local policymakers and government officials is important for all of the work we do but especially for one of the programs we fund, which we hope will provide much needed evidence to inform policy on a specific topic. One of the local government officials in a country where we fund studies was not involved in a funding decision because it was previously another colleague of hers who was involved in the earlier decision-making process. This resulted in this new official not understanding the logic behind why we decided to fund a study. She did not think the study would answer the questions that would be useful to the government. In an effort to ensure that the evidence we fund is policy relevant (as this official saw it), we decided that it was critical that we fund another component to the study in question to ensure that local government officials would get the information they need. This ended up being more money from us and more time from the study team that they had not planned on. My organization was not completely at fault here as we did our best to engage key stakeholders from the beginning but I think it is an important lesson in understanding evolving dynamics of the stakeholder environment and looking forward, we learned that we can make a better effort to be involved when turnover happens. For example, in a similar future situation it might be helpful to suggest convening a meeting with the outgoing and incoming person (and us as well as our grantees) to discuss where things are, how things came to be, and what our plans are to ensure that we are all on the same page.
Dear All:
I’m a bit late in introducing myself but I wanted to be sure to do so. My name is Nancy Diaz and I work at the International Initiative for Impact Evaluation (3ie for short) in our Washington DC office. We also have offices in London and New Delhi (our main office). We are a grantmaking organization that funds impact evaluations and systematic reviews in low and middle income countries. I am the program manager for our HIV and AIDS programs and the lead on communications work and I also support the stakeholder engagement efforts of our grantees who are carrying out HIV prevention and treatment research throughout Sub-Saharan Africa. Some of the topics we fund include HIV self-testing, VMMC, integration of HIV services with other health services, and combination prevention (particularly universal test and treat).
I’m really looking forward to hearing more about what you all do and hope to learn as much as I possibly can!
Nancy
