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Engagement efforts (and funding to support those efforts) are usually tied to specific protocols (and protocol funds), which makes the type of comprehensive engagement detailed in this module challenging. After and between trials though, CAB activities are still supported and this does help to sustain the commitment and motivation of these community stakeholders to some extent.
Thanks for fixing the link! My major takeaways from the webinar: cultivating your relationships with media contacts by giving more than taking (ex. giving positive feedback about their articles, connecting them with contacts in other fields, etc.). Another takeaway was to make sure to stay up on all the media and news that’s coming out about your topic area. That can be difficult, but it can be hard to know where your story or field stands in the media landscape unless you keep up and read everything.
This scenario mostly makes me question the ethicality of conducting a trial in a country where national regulations prevent the implementation of evidenced based strategies for HIV prevention (in this scenario, clean needles). On one hand, clean needles wouldn’t be available in absence of the trial anyway, but I’m not sure that affects the moral obligation of the research team to provide HIV prevention tools to participants.
While this particular issue may have been intractable, it seems the research group could have addressed some of the other concerns of civil society such as standard of care for seroconverters and screened out HIV-positive individuals, stakeholder involvement in protocol design and development, etc. Proactively addressing these items may have helped to smooth over tensions related to the needle issue, which the research team has less ability to influence. Additionally, acknowledging stakeholder concerns as part of results dissemination may have helped to prevent the rift between civil society and the research enterprise from growing.
I don’t think my organization has necessarily utilized social media to the fullest extent possible. We have Facebook and LinkedIn pages, but they’re relatively inactive. We communicate with our collaborators largely through email; social media hasn’t had a dramatic impact on our stakeholder engagement efforts. I’d be interested to hear from others about how they use social media to engage with other professional stakeholders.
Most interesting report for me was the third(?) apparent case of HIV acquisition despite high PrEP adherence (and in a demonstration project no less): http://www.aidsmap.com/page/3118230/
Seems like analysis is ongoing, so will be interesting to see future findings when they’re released.
If resources are insufficient to implement a formal formative research strategy, I think it’s worth capitalizing on the expertise and knowledge of local site staff (at least as a place to start). It’s important not to forget that site staff, outside of their day jobs, are also part of the local community. Site staff may have pre-existing relationships with local community stakeholders and key opinion leaders. These existing relationships may help to cost effectively catalyze initial research and information gathering efforts.
Thanks for mentioning this point about retention not being engagement in of itself. I’ve been examining the various network evaluations related to engagement lately, and many of the networks do evaluate CAB retention (for example) on an annual basis. It’s important to remember that simply retaining CAB members is not sufficient to conclude that sufficient community engagement is taking place.
In terms of community stakeholder engagement, I’d say my organization’s overall goal is ensuring stakeholder input is heard across all of and can benefit all of the NIAID Clinical Trials Networks (ACTG, HPTN, HVTN, MTN, IMPAACT). To facilitate understanding and buy-in, we host an annual face-to-face meeting of our Community Partners group in Washington D.C., where we discuss issues such as community engagement and revise the group’s work plan for the coming year. The face-to-face meeting (from my understanding) usually goes very well, but I think we can work to improve participation on the regular conference calls as they are not always well attended.
Luckily, my local team is already thoroughly convinced that stakeholder engagement in the clinical research process has tremendous value. Sharing of protocol specific case studies like the MTN-017 case study helps to further reinforce this value to my team members and to leadership in the HIV/AIDS Clinical Trials Networks.
