Online communities offer direct contact with patients, healthcare professionals and other stakeholders, but is pharma making the most of this valuable resource?

Online communities are rapidly entering the research mainstream across all sectors, as companies strive to draw closer to their customers. Even with its strict regulation and reputation for risk aversion, pharma too is starting to embrace this innovative source of insight, with many companies dipping a toe – some immersing an entire foot and leg – into online research.

Yet, at first, pharma was wary of online communities, says Chris Jackson, director of the customer agency C Space Health. "It feels like the Wild West for some people in the healthcare space, yet we have been doing this for quite some time. In Europe, there is a default feeling that they're not allowed to get as close to patients as they'd like, and so they've chosen to do research in other ways, but this has meant that companies are distant from patients. In the US, it is not like that; the connection with the patients is much easier."

Jackson is keen to reassure the industry around compliance. "With communities, we are able to foster deep intimate relationships with patients and maintain a safe gap between them and the client," he says. "We are a safe conduit and the gatekeepers, enabling clients to have a dialogue with patients while we ensure the compliance and regulatory issues are taken care of. It's been a learning process here in Europe, leaning on our experience in the US where we've been doing it for over a decade. EMEA is largely an untapped market."

Getting inside the customer's head

To better understand attitudes towards online communities, Jackson and colleagues conducted interviews with client practitioners across all industries. A key conclusion of their report, Customer Inside, was that insight research is increasingly moving online yet boundaries are not entirely clear. "Alongside [a] newfound confidence, there is also uncertainty and confusion. While some veteran practitioners and progressive users of communities are truly pushing the boundaries, others don't even know where to start. Classically, panels were seen as a digital space with large numbers of participants, making them better for quant. Communities were seen as smaller, more intimate spaces (eg, 100-500 members) and better for qual. In recent years, the line between communities and panels has become increasingly blurred."

A key attraction of online communities is the ability to gain quick insight and feedback. "They are instant feedback loops," says Jackson. "For example, with one client, a disagreement arose in a meeting so they asked the community. Within a day or so they received an answer to their question and were able to get past the problem. You cannot get the same speed with any other method; these folks are there 24/7 and are at our client's disposal. However, you can also use them for strategic and longitudinal projects where you can interact with patients over days, weeks and months."

Longer-term interaction with online communities can get quite creative, says Charlotte Burgess, business development director at C Space. "Everyone is using them to get access to their customers, but not everyone is using them to their full potential. Getting instantaneous feedback is brilliant but you can ask them to do a very broad range of tasks. You can even reach beyond the community itself, getting members to interview friends, parents or carers, or you can send out life-logging cameras they wear when they go on a particular journey to better understand that experience. You can be very creative and can string a series of activities together to create larger strategic projects. Think beyond the technology to the partnership you are entering into with stakeholders."

One company that uses an online community regularly is HIV specialist ViiV Healthcare. "What's been so striking is how keen people are to help," says Dr Thom Van Every, executive director of the company's Hive innovation unit. "It might be HIV specific or just a general lesson for working with patients but people seem willing to contribute and to help co-create things that will be beneficial to them or others. We find online communities are a very useful way to get quick and authentic feedback in a way that's not too formal or over-complicated."

The Hive unit is responsible for developing quick technology solutions. "It is innovation beyond the pill; 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 often 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 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.

While ViiV does not run the online community, it is fully branded, he says. "We make it very clear that we are interested in a longer term relationship with the community, which is why we say who we are and don't want an anonymous user group. Secondly, although we do incentivise research with Amazon vouchers and the like, a lot of the activity doesn't require explicit incentivisation. People in HIV are energised to contribute, to do something to help. The skill is managing the community to make sure it remains interested and engaged even when we are not asking them any specific questions."

Over time, the relationship with community members can become an intimate one, says Jackson. "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 the client organisation helping identify themes they might want to explore. It is pretty 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 really nice way for them to feel that we are really listening – they know that that if they raise a topic, something might come from it. They know they're not just there to answer surveys or be a data point; they are part of the conversation."

Common pitfalls with online communities 

Interviews with market research practitioners included in the C Space report into online communities identified four common pitfalls and some helpful advice to overcome them.

1. Underestimating the size of the beast:

Internal resourcing was a major issue for over three-quarters of respondents, with one senior insight manager at GlaxoSmithKline estimating that she spent a third of her time managing her eight-market community.

Three top tips:

  • Thoroughly scope what you can handle in-house, what you wish to outsource and what to collaborate on with your agency
  • Over-estimate the time required in the first three months
  • Carve out time to strategically plan projects that will hero the community and your department. Don't let it just become purely a reactive tool

2. Neglecting the art of engagement:

Sustaining a relevant and useful community takes effort. If you don't design a solid strategy to retain your members, your community will gradually lose its power. 

Three top tips:

  • Design the right value exchange for your members
  • Don't overwork the community. It creates diminishing returns
  • Provide regular, transparent feedback, on how the input of the community is being used, whatever your audience

3. Proving the ROI of the community is a common challenge: 

With spend on communities rising fast, proving return on investment is a tricky challenge. 

Five top tips

  • Define the community's strategic purpose
  • Plan impact-tracking from the start
  • Resist the temptation to promote the community on cost saving alone
  • Build impact-tracking into your business' system
  • Make it easy for stakeholders to feedback

4. Forgetting your community is a brand: 

"The more energy we invest in engaging and sustaining our community members, the better our projects tend to be," said one interviewee.

Three top tips:

  • Design a brand identity for the community that is 'shareable' and links to a strategic business priority
  • Have a campaign mindset. Identify your audiences and package up projects, insights, and emerging ideas from the community with these audiences in mind
  • Create hero stories built around the unique types of project that an ongoing community enables you to undertake

You can view the Customer Inside report here