Forum Replies Created
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Dear all, I thought the course allows the GPP booklet to be ‘tamed’ somewhat and one has a better understanding of the overall structure and content of the booklet. I also thought the course creates a safe environment for people to reflect on their own engagement practices, so these can be strengthened. Course participants get exposure to engagement across various prevention modalities, which expands one’s learning.
For knowledge check – it may be easier to say ‘More than 1 answer mat be correct but choose the best answer’.
Also, if a course participant get an answer wrong, indicate which one is wrong so the participant doesnt have to re-enter all the anwers again.
Congratulations to the entire team for their meticulous planning and rollout of the course and for creating an enviroment for participation on the issues.
Hi all, IRB reviewers also need to see in the protocol the steps that will be taken to offset harm from VISP – it helps them decide if the risks from vaccine administration will be reduced to an acceptable minimum, and then be sufficiently outweighed by the potential benefits. I suspect for the P5 studies being to be implemented in Southern Africa there will be interest from IRBs to see if the measures introduced to offset VISP in, for example, the US can be achieved as comprehensively outside of that setting.
Hi all, this has been a fascinating discussion. My brief comment is that even when local site-level CABs may not have been involved in protocol development, it is worth noting that much of the protocol is formulated at quite an abstract level, which leaves much room for site-level CABs to be impactful about how broad standards are implemented in a real setting.
I am not arguing against the need to get local review as far as possible, but merely observing that the broad formulations used in protocols often leave much room for impact of local actors in the local setting.
As has been mentioned here, local community actors need to know what inputs have preceded & how these were seriously reflected on.
What a great example of how disappointing trial results – when communicated quickly and honestly – can become foci for strengthened relations, and not the opposite. They are also superb ‘research literacy’ opportunities – researchers seek answers, even if it is bad news. Cathy
Hi everyone, in our social science research into ethical concerns, we are very interested in which stakeholders can help us to improve the ethical rigour and quality of our studies, so tend to use that as an important way to involve some stakeholders and not others – so it is their potential influence over the ethical ‘shape’ of the study…can they see risks that we can’t? can they identify beneficial impacts that may be hidden from us? can they tell us how to improve understanding of the study?
Hi all, just a response to Jauhara’s comments about how the process of developing protocols can fail to incorporate views/ opinions of site-level community representatives.
It might help if community-representative views at the level of the protocol-development team were collated and disseminated to community-representatives at the site level.
Then there would be more knowledge about concerns and how they were responded to when protocols were developed.
Enjoying lesson 3!
Cathy
Hi everyone, our group is not based at a trial site, but we prior to conducting some of our social science research we have identified who might be impacted and reached out to identify risks of our studies, identify how findings might be maximally taken up, identify how best to approach people to take part, and then later to discuss preliminary findings, and collaboratively explore the possible impact. A key stakeholder that might be forgotten is the ethics community in the form of ‘reviewers of studies’, and it has helped us to think of the relationship and correspondence with and updates to ethics committees as a form of engagement….
And also to ensure that stakeholders clarify their interests – occasional hard cases might be because of vested interests which is a problem that building literacy might not ncessarily solve, as important as it is….!
1) It was thought-provoking to consider participation at these various levels of abstraction – I suspect the danger is getting so caught up in activities that one loses sight of whether the activities are truly operationalising an over-arching goal.
2)Benefits of sustained engagement surely include more trust and less suspicion that researchers are not merely doing ‘engagement blitzes’ when it suits them (such as around recruitment); which might facilitate more frequent, more appropriate, more constructive inputs from stakeholders at critical timepoints. The hard part must be when research teams and other stakeholders themselves don’t agree about when an input is ‘appropriate’ or ‘constructive’.
Dear Stacey and Anne, thank you for distributing the draft tools. I am particulary interested in how they might help with SE around issues of ancillay care or standards of prevention and am happy to send comments on these if that would be of any use. Cathy
Hi All, and it seems important to acknowledge that even if one’s original assessment is not perfect, the guidelines recommend an ongoing critical reflection about the quality of engagement through-out so there are opportunities to bring more stakeholders into the fold.
I suspect that sometimes stakeholders are ommitted by accident and not for necessarily sinister reasons and that a constant, honest, conscientious ‘how are we doing?’ goes a long way in communicating that one is committed to the principles…
Hi everyone
What a great spread of expertise and experience we are hearing from these posts.
Responding to an earlier post from Bob, I think it will be interesting to understand more about people’s experiences of barriers to GPP, and good ways to overcome these; and I am sure that this forum will be a supportive place to reflect on some of the knotty issues we have all faced.
looking forward to lesson 1 …
Cathy
Hi all, this discussion zeros in on how important it is to assess outcomes of GPP like impact on ethical quality/ rigor; and whenever it’s possible it would be great to see materials that can help all of us to measure that better.
It will also be important and reassuring for bodies with ethical oversight like IRBs to understand just how seriously research staff are taking GPP.
Looking forward to starting the course next week! Cathy
Hi everyone,
I work at a research and resource-development group for HIV vaccine trials (HAVEG) based at a South African university (UKZN). We do empirical research of our own into some of the complex issues in trials like ancillary care or informed consent. I work with a great bunch of people from different backgrounds (consultants and collaborators) to do our work. We try to find ways to intersect with all the other interesting ethics work that lots of other people are doing.
We have found GPP principles to be so helpful when we think about how to run our projects, plus the some of the theoretical issues around GPP are pretty fascinating too.
I am so looking forward to being part of the course – with a particular view to how can such materials possibly be adapted sometime in the future to assist other stakeholders in these trials like IRBs/ RECs to increase the impact of GPP, and make trials more GPP-sensitive when RECs review protocols. And to learn more from all of you about engagement efforts around trials sites, and implementing GPP.
I have a ten-year old son – and no pets despite serious lobbying and advocacy from my son…!
It is wonderful to read everybody’s background and experiences – it is clear we are going to get a rich and interesting angle on the issues as we go forward. Thanks for this opportunity.
