Wednesday 30 May – Friday 1 June the HIV Vaccine Trials Network (HVTN) held their summer full group meeting in DC, as they always do. This was the first time I attended the DC meeting. I had planned to attend even when I was in Seattle but then I got this job at Consumer Reports and moved to Manhattan, so instead of flying in I took the train.
The biggest news was the start of the discussion to restructure the research networks, which I think everyone feels is overdue. The situation is that there is the HVTN, the HIV Prevention Trials Network, the Microbicide Trials Network, the AIDS Clinical Trials Group, IMPAACT (a mother-child transmission study network), and perhaps other smaller groups all doing HIV research. All of them need human research subjects to volunteer, and all of them need community input to conduct their research, and all of them get funding from the same sources, but they all have a pre-Internet legacy of not having good inter-network communication and right now in some ways they compete for the same resources and everyone wants them to work more together to everyone’s mutual benefit and at loss to no one. Because of the economic crisis in the US as well as world-wide, funding will not increase anytime soon and for financial pressure the networks feel motivated to become more efficient with less money quickly and despite the short-term costs of reform.
Another way to describe this same communication problem is to say that there are too many managers who are working under capacity, and the intent of the restructuring is to centralize management so that more clinical sites report to fewer centers for coordinating their research and outreach.
My contribution to the process is that I advocate for greater access to information on the Internet. It is my assertion that in general, none of the networks have acknowledged the existence of the Internet or Internet culture to a reasonable degree. I understand why; the people who attend the conference and run the networks do not use the Internet and are not convinced that other people do either. Their attempt to modernize is to publish some limited information on certain websites, but it seems obvious to me and I assert it would be obvious to any other digital native that the organization’s concept of the utility of the Internet is as a way to replicate the uses of print media, and not as a social media tool. The people in the network continually talk about social media and I know they hire smart people who very well understand what social media is, but still the people who make decisions about social media do not even understand the concept well enough to have a conversation about it so everything they do seems very awkward to me.
I should say that I am nearly alone in saying all this, and perhaps my opinions are even unwelcome many times. Definitely the HVTN and other research networks employ many brilliant people each with a lifetime of communication experience more than I have, and undoubtedly I am as uncompromisingly biased against their way of doing things as they are against Internet culture. And I know this whole Internet thing is not for everyone in all circumstances but as time is going on I am seeing their views as increasing antiquated and starting to wonder more when the point will come when they say, “Well, this Internet thing is not going to go away, maybe we should do something about it.”