In September Roche UK invited representatives from 50 patient groups for an intriguing event at The Wellcome Collection in London.
The first part of this article covered Roche’s goals for the Share+ social media and digital summit and I’ll now turn the patient groups themselves and the issues they face when it comes to social media and digital technology.
Challenges mentioned by the audience during the sessions included: how to make websites more user-friendly for the elderly; developing local social media policies; and building and mobilising patient communities to advocate for better access to medicines or services.
Diarmaid O’Sullivan is a campaign researcher with Older & Bolder, an Irish alliance of charities for older people.
“For ourselves the big problem when we were getting started was tone,” he said. “We’re an alliance and we have to honour the fact that it is an alliance and that there’s areas where we have strong policy positions and how can we do that on Twitter without being a robot.
“So it took a while through trial and error to find a human voice and one that you could use to interact with other Twitter users. It was only really overcome by dipping your toes in, seeing what other people do really well and realising what kind of conversations can happen on Twitter.”
For the Terrence Higgins Trust the big challenges it faces are around the segmentation of messaging.
“We’ve got different audiences based on different demographics, for examples for HIV and groups that have the most prevalence of STIs and prevention work, and there are cultural issues that inform all of those,” explained the charity’s web development manager Peter Kelly.
“We work very much with the gay community and the African community, but actually a lot of our messaging is very much applicable to any sexually active person in the country. So we always have to be very mindful about communicating with all those different groups.”
“The challenge for us is around how much we segment our social media presence, because it’s very important that, as a charity, we’re there for people whoever they are and people don’t feel like they’re being pushed into a backwater of our provision. So we want our main channel to communicate with everyone, but at the same time it may be necessary for us to branch off.”
Punching above your weight through social media
Patient groups’ limited resources also came up a number of times as an issue, and one that meant patient groups often had to be quite selective about the channels or even conversations in which they participate.
Nevertheless, Beating Bowel Cancer’s head of campaigns and communications Stuart Barber said his charity has been able to ‘punch above its weight’ by using social media to engage with patients, with a particular focus on peer-to-peer support.
“The way that we use social media is to get our patients talking to each other, helping each other. One of the things that we’ve got to do is to listen to what those conversations are and we want to see social media as a way of us expanding our base – 40,000 people each year are diagnosed with bowel cancer and we’re only talking to less than 10 per cent of that if not less.”
The charity has about 7,000 Twitter followers and runs an hour-long monthly Twitter chat that helps inform the charity about the sort of things that are concerns to patients.
It also has a very active patient forum – and it’s this that Barber said has been the charity’s most effective use of social media, generating ‘patient champions’ that lead the conversations and attracting newly-diagnosed patients seeking advice.
To lead this work the charity has a digital manager, a digital officer – whose role includes following conversations on Facebook and Twitter, and nurse advisors who follow and can respond to questions asked about treatment issues on the forum.
Barber also noted that one of his focuses in communications is to start looking at the conversations journalists are having on Twitter, spurred on by the social network’s wide uptake across the media and use as an tool for gathering story leads.
Pharma involvement
Finally, what did the patient groups think of a pharma-sponsored event like this?
Beating Bowel Cancer’s Stuart Barber told me: “Even though we’re coming from a patient perspective and Roche are coming from a pharma perspective, we’re all in it together in terms of increasing better outcomes for patients, whatever the disease is.
“So if we both come in with that same objective of empowering the patient and listening to what the patient has to say, then [Share+] is a good idea, and the more we can work together in terms of pulling in the patient perspective the better.”
This sentiment was echoed by the Terrence Higgins Trust’s Peter Kelly.
“Any kind of sharing of learning between organisations that are health information providers is very valuable. We all work in our own different niches and seeing the bigger picture is very useful,” he said.
