Micky Hingorani
Forum Replies Created
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Social media and online communication is a great tool, especially for today’s generation. In all the programs I’ve volunteered for in the past, a great way to reach out to people that are interested in participating (whether it was about a clinical trial or volunteer event) was through Facebook and Twitter.
Although, the common misconception that I hear through different community stakeholders is that the young generation is a “hard-to-reach” community. Certainly, I disagree.
If you make your social media strategy effective and use different strategies to reach the young population, then you can attain more individuals to participate in your project.
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Once the complete protocol is received, a meeting/training is held with the CAB, CSOs and other relevant stakeholders. They are been trained on the technicalities of the protocol in the simplest language and manner by which they can understand. At the training, there is the use of illustrations, everyday language and feedback mechanism as tools for effective communication to aid understanding of the protocol by the stakeholders.
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Once the proposal is received, the principal investigator goes through it to understand more on the methods proposed, the research participants needed etc. After that a sitting is held within the study staff and they discuss the proposal and try to localize it and choose an applicable study site. The proposal is then submitted to the local IRB for review and their issues addressed before study initiation.
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Our site is involved in HPTN 083. The CAB did not read the protocol yet. He will arrive in the final version and translated into Portuguese. I believe that it should be read carefully by members of the CAB, so we can understand it. I do not think that changes can be made. Although we have not read yet, the research team told us about protocol. As said Piero, we found that one of the requirements is that transgender women do not have gluteal prosthesis, because the injection is applied to the gluteus. In Brazil most transgender women have prosthesis. This is a problem that we have not been consulted in the writing phase of the protocol
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I believe that Andrea and Piero brought an important point to the study of HPTN 083 in Brazil. We already had a chance to have a meeting with some other CABs from different regions of Brazil that will conduct this trial. We will also have a chance to discuss more at the end of this month during aour national CAB meeting. How to recruit transwomen without a presence of silicone implants in their gluteus for this trial? It will be a challenge for all of us and i guess we will learn a lot. In our reality, before the upcoming trial starts the research team asks for a meeting with CAB members and also with specific stakeholders. They present the protocol and also the infomed consent foms and expected inputs, doubts, misconceptions, feedbacks from the community perspective.
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As soon as our final protocol in on site our Principal Investigator and study coordinator will review it and soon as they are done will will conduct a forma l or informal training for all the staff members.The we will meet with our CAB members to inform them about the new protocol and also get their inputs and concerns ,as stated by GPP stakeholders can provide input into the development of the protocol.We also bear in mind that the protocol can be updated or amended. And it’s important to us for our stakeholders to have a say on the protocol development as this will help us to conduct our study considering their cultures and beliefs.
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upon receiving a final protocol we arrange a CAB meeting to update them about the protocol and also to train them on the protocol so that they could be familiar with each and every aspect of the protocol . we also allow them to identify areas they dont understand and to raise their questions and comments on the protocol because GPP state that the stakeholders are able to make inputs in terms of protocol development. As per GPP requirement all the research staff involved with the clinical trial also receive intensive training on the protocol
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It is important to engage stakeholders in a dialogue to identify the social and environmental issues that matter most to them. Involving community advisory group (CAG) play a significant role in improving decision making and accountability for protocol development.
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One might consult with the CAB, go through the protocol section by section – get inputs, feedback, educate about aspects that seem unclear, recommendations. Consultative meetings, workshop or training for trial site staff get held and inputs gathered. Relevant key stakeholders at senior levels such as programme managers from relevant NGOs, healthcare facility management etc are consulted. Trained field staff can also pilot the project with communities at non-trial site to get feedback. When we do that we tell the communities honestly that we are on training and the same data collection tools will be used with trial site participants. We note any issues that come up during such filed work and provide feedback during debriefing. If there is a need for major changes the Health Ethics Committee is consulted for review and approval of the final final version of the protocl
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We engage our CAB, through Protocol training and furthermore they are part of Protocol review and any protocol amendments.The input of the CAB is communicated to trial funders after deliberation. Usually any issues are addressed and resolved and are usually a result of seeking clarity on any topic within the protocol.
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In my work, social media posting is very restricted. The government has specific offices and positions that are able to post to social media on behalf of the institution–my position is not one of them. In working with the Martin Delaney collaboratories, their individual institutions do not have as rigid restrictions and they are encouraged to use social media in their own various community engagement plans. During the last cycle of the MDCs the national cab spent a great deal of time and resources on creating a social media strategy that involved Twitter and Facebook to spread the word about HIV Cure research and the MDCs. It was great to see them come together as a group, develop the plan and to be able to facilitate the conversation and this very important work.
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using social media in clinical trials became a cheap and fast tool to disseminate information, recruitment and also easy way to recevive inputs and feedbacks from the community. Facebook and whatsup are most used social medias in Rio.
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It is great that you are able to use social media to communicate with stakeholders about work that needs to be done in the community. This is value added in that it is an easy way to communicate in real time, without the need for in-person meetings or stopping to have conference calls. I’m sure it is something that the community stakeholders value very much.
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Hi Ponto.
I agree with you that social media has a number of good qualities – it’s cheap, it can be used to send information very quickly and so on. It can also be a good avenue for educating and engaging multiple groups like potential participants, advocates, health care providers in research trials. It can positively affect a trial by building the confidence of participants and community stakeholders in the study, allowing them to share experiences and make their contributions. Research teams can also use social media to create awareness of a research study and this can help to boost recruitment. A recent blog post I read highlighted some negative aspects of social media. For example, online chats/discussions about side effects with community members advising others to stop taking their study medication e.t.c. It was quite an interesting read. You can find the full post here: http://www.quintiles.com/blog/social-media-the-evolving-impact-on-clinical-trials -
I tend to agree with you Samantha that even though the protocol might be finalised at implementation things to come up that needs adjusting. For instance in our case we find that even though they might have been consultation participants whose indegenous language is isiXhosa sometimes prefer English because they say they do not understand the isiXhosa used in the form because it is not how they communicate on a daily basis. Even where people grow up influences the kind of isiXhosa they understand. Me being from the Eastern there are aspects of isiXhosa I understand compared to people who grew up in the Western Cape even though we are all amaXhosa. Young people prefer English to isXhosa and this is so because some of them attend multiracial schools where isiXhosa is not offered or only offered as an extra curricular activity.So we use English and IsiXhosa consent forms and provide participants the opportunity to choose. We have also noted all those things for future reviews. We also ourselves find that the isiXhosa used in some consent forms is high level or a bit academic (maybe because we are part of a university) and make recommendations for a tone down, so we are also able to offer suggestions based on lessons learnt from the field or our own experiences as we do translations.