At C Space, online communities have been our bread and butter for more than 17 years. Even speaking with more than 20,000 consumers across the world every year, comments like this are rare:
“In 1994, when I was initially diagnosed in the very early stages of HIV, only gay men filled the clinics, hospitals and support groups. Gradually, I have seen more women in the same places. HIV has touched people in every socio-economic stratosphere. Be thankful for what ViiV is doing for us.” Matt, ViiV Community Member
It’s rare for a lot of different reasons – because it’s virtually impossible to recruit folks like Matt given the taboo nature of his disease, because such authentic disclosure is hard to achieve even without such sensitivities, because we don’t often see participants thanking the brands that own their communities and, more than anything else, because you just don’t see pharma brands getting close to patients in Europe.
Pharma brands in Europe traditionally keep their distance from patients because legislation prevents marketing to them; so many pharma brands are reluctant to communicate with them in case they overstep the line. But by creating safe, compliant spaces these challenges are surmountable. And when you’re dealing with a global health epidemic the scale of HIV, brave, fresh approaches are just what’s needed. ViiV established The Hive, a specialist HIV digital innovation unit to create exactly those approaches.
“It is innovation beyond the pill”, says Thom Van Every, executive director of the Hive Innovation Unit. “We look at building and testing prototypes for patients with HIV or the healthcare professionals who look after them, contributing to the HIV ecosystem in a digital and tech way. We do ‘sprint’ projects, a tech term for quick projects, where we’re trying to test and learn, test and learn in an iterative way. Involving patients, doctors or users through online communities is a fantastic way to get quick feedback in order to adjust our ideas.”
ViiV has used this co-creation approach successfully in several ways, says Van Every. “In one project we were looking at the unmet needs of patients with HIV in the UK. Our original view very much focused on unmet clinical needs but the [online] community told us that the big issues were not really clinical, more those issues that affect the lives of patients outside the clinic. We wouldn’t have gained this insight if we didn’t ask the community about things like how they get travel insurance when they go on holiday and how they know which countries will throw them out if they find out they’re HIV+ or how to interact with social services if they’re an illegal immigrant with HIV. These kinds of insights are off the radar if you only focus on the clinical space.”
Another project is a peer-to-peer mentoring app in the US. “We wanted to understand when in their journey with HIV would patients most would value support. The obvious one is diagnosis, of course, but the community helped us find other ‘flex points’ – for example, if you get another illness and experience drug interactions or if you’re in a new relationship,” he says.
Over time, the relationship with community members can become an intimate one. The communities are invitation only; they are also closed, safe environments for members to discuss whatever they want to discuss. We analyse the naturally occurring discussions and bring those insights back to our clients, helping identify themes they might want to explore.
It is common for a topic to arise that over time we develop a research project around, using the very people who started the conversation. It is a great way for them to feel that we are really listening – they know that if they raise a topic, something might come from it.
Members know they’re not just there to answer surveys or be a data point; they are part of the conversation.