Forum Replies Created
-
Replies
-
These are great comments!
I agree Agnes, involvement and roles of stakeholders should be considered and discussed as early as possible– and as Rona suggested, when things do go according to plan, giving opportunity to advocates and other key players and decision makers can help dispel rumors and disseminate accurate information. Returning to your initial communications plan can also help to maximize engagement opportunities associated with closure and dissemination of results and establish satisfying relationships!
Hi all:
There are some great examples of inclusive and ongoing engagement– where there is real cooperation and alignment of interests between the community and research team! And I love the ideas about leveraging community assets and expertise to sustain engagement.
Do others have examples of innovative approaches that have helped to build a longer term commitment from community members?
That’s great stuff, Jau!It sounds like some of your research team’s approaches and engagement activities are opportunities for you to communicate with the local community, not only about your trial, but also about their health priorities and needs overall– and stakeholders probably leave feeling like they have truly benefited!
And with limited resources and staffing, creative sustained engagement can be very challenging…. what do others think?
Those echo my thoughts too, Cathy! I Thinking from a SA perspective, potential harms from VISP can be very significant in our setting–such as difficulties in obtaining medical, disability or life insurance policies, obtaining visas, inappropriate treatment for HIV, and/or disruption of personal relationships with family or friends. VISP can really challenge heath care systems in resource limited countries, because of the need for specialized testing and follow up– and educating already overburdened and busy health care providers in these contexts can be a major undertaking on its own.
For some more reading, a webinar about VISP was organized by the Vaccine Enterprise and presented in May 2013. A recording is available at: http://www.vaccineenterprise.org/content/timely-topic-VISP
Additional resources about VISP are also available at:www.vaccineenterprise.org/VISP-resources
Just cut and paste the links into your browser. I hope you enjoy– it’s interesting stuff!
Great question Pat!
In other settings where they behaviors are criminalized, trial sites have engaged MSM advocates or NGOs to conduct trainings for the police about the benefits of the research. Community leaders can also help your team think about and plan for crisis management that might result from social harms–like, is there budget to assist participants if they are arrested based on sexual orientation and need to be bailed out of jail, or if they need to find safe housing?
Hi Laura and others:
I think your responses definitely illustrate the ethical responsibility of researchers to minimize the risks in a trial, such as the potential social, physical, and emotional harm that could result from a false HIV diagnosis due to VISP. In fact, it has risks for trial outcomes as well–if enough participants get tested outside of the trial and potentially unblind themselves and the trial staff, it could pose a big problem with maintaining the integrity of the data being collected! So –yes, it is very imperative to think critically about the range of potential harms and ways of addressing them with stakeholders, such as local health providers and even other trial sites!
Hi Pat,
This is actually a great example because it highlights that it is not possible to foresee and prevent all harm, like a finger prick for example– but we can minimise more significant risks by using stakeholder input to identify potential harms and ways to manage them.
In order to identify common social harms that may affect MSM trial participants in Thailand, which stakeholders do you routinely consult? CAB? NGO/CBOs, service providers?
Hi Rona and Pat,
I certainly agree that earlier and better collaboration and negotiation could have offset some of the controversy… but it’s a difficult situation and one that also speaks to working in settings characterised by poverty, very entrenched stigma, and inequity between different parts of the population.
I know we all agree that negotiation of prevention standards is essential…but how do we frame and conduct those conversations?
What are the overarching considerations? Feasibility? Impact of the interventions? Ethics? Cost?
Hi Pat,
MTN 017 is indeed a great example of how partnerships with civil society, policy makers and other stakeholders influenced pre-protocol design.
MTN 020 (ASPIRE)–the vaginal ring study– is also a good illustration of how protocols can be designed to accommodate new information as the trial progresses.
I think these ideas about ensuring early stakeholder input are also extremely relevant and applicable to all of the PrEP demo studies that are and will be ramping up…
I loved your comments, Laura. My brain is now whirling.
My two cents:
I think the global research community (and this includes national governments!) must do a better job of supporting researchers from low and middle income countries to design and conduct their own trials– although, I acknowledge that externally sponsored trials can and do strengthen capacity. I agree that some of the most meaningful and pragmatic protocol development occurs at a very local level–and this approach, as you say, eliminates buy-in! The research is owned and the benefits are understood….
Good food for thought, but I may have digressed 🙂
Absolutely, Jau!
Community perspectives can be crucial to the strengthening of trial design and understanding the research context! Making CAB members part of the protocol development team and seeking out the opinions and feedback of other key community representatives are great ways to ensure this happens. This, of course, is a much easier task if partnerships are established very early and participation is encouraged through educational events and other forums.
It is challenging– but very possible!
Leader and Agnes– these are great examples of the complexity of media coverage.
I think it all begins with understanding your site’s goals and objectives in comparison to the interests and needs of the media– AND (as you both suggest) a good knowledge of the limitations and strengths of each media type (online vs radio vs print news vs TV). For example, social media might be useful for providing short updates about the trial or for reaching out to new stakeholders, but it may not be an appropriate forum to elicit detailed feedback from the public.
There are many ways to incorporate media into your communications strategy and your engagement of media will probably vary at different points in the research life cycle. But one thing is for certain– in this day and age, it is essential to devote time and resources to monitoring and responding to Internet coverage. Local staff and colleagues can help your team to develop systems for tracking and sharing media messages. Having pre-approved and prepared messages and materials, developed with stakeholder input, can help your team quickly (and professionally) correct inaccurate information and strengthen your relationship with the media source!
And as an add on to Rona’s post, you can all stay updated about HIV R4P at AVAC http://www.avac.org/event/hiv-r4p
Or on the blog WhatUpHIV -http://whatsuphiv.blogspot.com/
So far, it’s a great conference— I LOVED that the renowned Bridget Hare included GPP in her plenary presentation this morning, when speaking about working with key populations and ethical trial design. It gave me goose bumps!!
Rona, we are actively working on a GPP Library for the course –so your abstracts would be great additions!
Hi Pat,
You are right! It’s important to try and build partnerships with various stakeholder groups (community, regional, national, and even global)–you can begin reaching out very early on, inviting key stakeholders to attend workshops, ‘information meetings’, launch events, etc.
You will most likely need to provide different opportunities for participation and establish multiple informal and formal advisory mechanisms for different groups over the course of the trial.
Remember that national stakeholders are often just as important on the priority grid as community stakeholders, because gaining the support and ‘buy-in’ from government or key leaders can help your site establish credibility with other stakeholders.
You will also want to discuss roles and expectations of stakeholders with the individuals themselves, using educational events or meetings to build literacy and at the same time incorporate their feedback about the overall engagement plan.
What do others think?
