Building an online voice and working smart in a digital world
Rob Camp kicked off this plenary session by declaring that he had been sending out tweets for the past couple of days, looking for answers about two questions: What do patients need to communicate? And how do patients need to communicate? He read out a selection of words from the responses as something to think about when considering “messaging to the outside world”:
- meaningful involvement
- patient centred
- need to be involved as patients
- need more skills
- need more skills support and confidence
- transparency, transparency, transparency…
He left it to his fellow moderator, Denis Costello from Eurordis, Spain, to deliver an eye-opening presentation on where you can get by being smart online. “It was too tempting to focus only on EUPATI,” said Costello, “so I took a lot of examples from people I know who use these tools.” He hoped that workshop delegates would be able to take away ideas for their own organisations as well as for EUPATI. Because as he said, if EUPATI is to develop to the scale it can be and needs to be, social media is going to be a big part of the answer.
But you have to be smart about it. And, indeed, Costello’s presentation focused more on smart thinking about how to gain attention than on the technologies of social media.
Stand out from the crowd
To illustrate the potential, Costello showed three examples, starting with a Spanish father of a child with atypical haemolytic uremic syndrome, Paco has built up a lively online presence publicising a potential lifesaver for people with the syndrome – a colourful bracelet holding their medical history that doctors or nurses can access via a smartphone.
What has really built that online presence is Paco’s knack of photographing famous people wearing the bracelet, including the Queen of Spain, and footballer Luis Suárez. “We are all Paco. You can be Paco,” said Costello – anyone can become a key patient opinion leader with just a mobile phone. “The first step starts with you. Bring your personality into [your] cause.” He cited other individuals including two patients, Dave deBronkart (Twitter handle @ePatientDave) and Alfonso Aguarón (@AlfonsoAguaron), and genetics professor Kate Bushby (@BushbyKate) as examples of what individuals can achieve as “real ambassadors for the rare disease world”.
Costello’s second example was of a slightly different, less individual, approach: Nic Sureau, co-founder and chairman of British rare disease research charity Findacure. Costello singled out Findacure’s site for its “clear and captivating message” – one that has made it stand out among rare disease patient groups in the United Kingdom. The message was the importance of the brand and how it combined idealism, hope and energy. “We need to think about how to position our brand,” he said.
For his next example Costello took Téléthon set up by AFM, France’s muscular dystrophy association. Back in 1987, they persuaded French public TV to give them 30 hours of broadcasting time, mobilising hundreds of thousands of volunteers and literally lit up the Eiffel Tower. The Téléthon had five core objectives – not unlike EUPATI, in fact:
- to make rare diseases visible,
- to heighten public awareness,
- to convince government and institutions,
- to share knowledge, and
- to be accountable.
The Téléthon now raises around €100 million a year. The AFM is moving on to other media, developing an Internet strategy through which they aim to raise 20 per cent of their donations.
Build your brand
“When you create a voice you need to go back to your identity,” said Costello. In the AFM’s case, these are: solidarity, efficiency, innovation and transparency. What does this mean for National Networks? Above all, they have to choose the brand “archetypes” that best accord with the sensitivities of their own audiences. Brand matters. “You want to position yourself,” he said. “How do you differentiate from the nearest people in your space? …There has to be a meaningful difference that would convince somebody that you are for them.”
So how do you create a voice, a brand? How do you position yourself or your organisation? Costello talked about constants and variables. The constants, which underpin all brands, are integrity and nurturance (the idea that you care for your audience). The variables – where you sit in between dynamic and passive leadership, in between being sophisticated and being “tough and simple” – will need to be determined when you position your brand.
Positioning your brand involves being able to answer questions like “What’s innovative or different about my group?”; “Are we straightforward enough?”; “Does our mission to care come across?”; and “Are we playful or serious?”.
When it comes to putting the brand over, we need to use all the tools at our disposal, within the time available to us, in the most intelligent way possible. That means being multichannel – but it doesn’t mean you have to use every channel. So a campaign can be conducted entirely via social media, or with social media plus a website or “microsite”. And noting EUPATI’s ambitious goals, Costello mentioned two other tools: mass emailing, and advertising via Facebook or Google.
Does online advertising work, interjected Camp, and if so, is it the best way to spend the money we have? It certainly does work, said Costello, because people with rare diseases are looking online for help. As to money, he said that Google has grants (in the form of free advertising) that charities can apply for, though they have to do it in their own country, and not all countries are part of the scheme.
Ways of campaigning
Costello then moved on to three examples of different ways of online campaigning. In the first – a battle for access to medicines – a patient group brought stakeholders together to set up a microsite to contest a decision by NICE not to fund a drug for atypical haemolytic uremic syndrome (the condition for which Paco in Spain is a patient advocate). He described the site, aHUS-action.org, as “very evidence-based, sober, but also very dynamic, calling for action”. The campaign worked, engaging payers in the United Kingdom and leading to negotiations with the company over price.
His next example was “more of an advocacy approach”. Eurordis, which advocates for rare diseases generally, surveyed 12000 patients and summarised the results in a book presented to the EU Health Commissioner on Rare Disease Day, backed up with live tweeting from the event, video on demand and links to a PDF of the book. The result: a European recommendation on action on rare diseases. “Social media…should always be part of a communications and advocacy strategy,” said Costello.
Costello then turned to a campaign run by EUPATI’s own Jan Geissler conducted solely on social media. Called “Patient In, Not Out”, it was light and agile, cost-effective, and with eye-catching images of patients holding up placards with the potential to go viral.
Awareness campaigns are all-important. “If your disease hasn’t got awareness, it doesn’t exist in the minds of healthcare professionals and policy makers,” said Costello. One example: the “blue lips” Pucker Up for Pulmonary Hypertension Campaign, which resulted in record numbers of postcards bearing a blue kiss – and an entry in the Guinness Book of Records.
Never mind that some say every day is a “day for something” and that the saturation point has been reached – getting everyone together to do something, and seeing that grow over the years, has an enormous impact on your own community, said Costello.
Another key tool for patient organisations is crowdfunding. Costello’s tips here: think about who your members are “because they are the ones who will get it off the ground”; have a video – it can be simple, but it must make an impact within 30 seconds; and “front-load” the campaign so that on the day of the launch there is already some money to be donated. Eurordis ran just such a campaign with a patient group in Spain that needed €14.000, centred around a volunteer running in the Barcelona marathon: it raised 75% of the total within 72 hours.
Costello ended his presentation with a list of useful tools, starting with rareconnect.org, a Eurordis initiative to connect rare disease patients globally, and including tools such as hootsuite.com (to listen to social media and schedule tweets), Google alerts, AdWords, and so on.
It was then the turn of Laura Kavanagh from IPPOSI to introduce EUPATI’s new directory of National Networks, available on its website. It links to each country, with details of national teams (if they are in place). Of particular interest to this discussion, it also has links to Facebook and Twitter feeds, video walls, and so on. “The idea is that you can get more information about what the national team committee has planned and share this further with your organisation – and vice versa,” she said.
Just how active they are depends on the individuals involved – volunteers all. But for a good example, said Kavanagh, take a look at the Spanish entry. Costello noted that Spanish social media activity had started slowly, but then picked up when a woman from the lupus association in Madrid assumed leadership of the Network’s social media profile. So the message, added Camp, is that each national team has to find someone good who wants to do the job.
Costello had laid out a rich menu of social media techniques, and Camp opened the discussion by asking him whether there is a right or a wrong way of doing social media – or should we try everything he listed? Costello strongly recommended not doing everything. “We all have very limited time,” he said. “Pick one or two priorities and one or two channels that would work for us, get it to something credible, grow – and then use tools for the voice you want in the country you are in.”
Simone Silenzi from the Italian brain cancer association agreed. His organisation had created a Facebook group in 2009, with 5000 members. But he warned of the danger of “dispersion, fragmentation” if communication is misdirected. “So consider your goals,” he said.
The urgent need for the EUPATI toolbox was underlined by Hursh Joshi from pharma company Novo Nordisk, Denmark. “It is great that we are going to have 100 people trained by the end of next year, but the way the project can really take off is at the national level, using the Research Toolbox.”
For Joshi, the national level is the key theatre of operations. He talked of the importance of getting stories out at the national level, talking to national politicians, regulators and the media. “That really requires people in the National Networks to create networks and to use those networks…We can make all the strategies and plans at the European level and have some influence, but we need to have a communications plan at each national level.”
Using social media can also throw up unexpected challenges. The greater the level of interactivity, the more likely a site is to receive information about adverse events. As a delegate from pharma put it, adverse events reported on social media have to go to the pharmacovigilance department, which then has to research it, contact whoever has posted it, communicate with them and ask if it has already been reported to their doctor. No wonder pharmacovigilance departments might be cautious about social media! And it’s not just a problem for companies. Claire Jacklin from the National Rheumatoid Arthritis Society, United Kingdom, said her organisation also had an obligation to pass on adverse events: “It does add on lots and lots more work.”
(New technology might be able to help here. Costello pointed to a pilot project with the US FDA called Webradar which analyses social media and maps slang terms onto medical vocabularies, capturing adverse events in real time and creating automatic reports for the FDA. “Exactly the same results as normal pharmacovigilance, but at a fraction of the cost,” said Costello.)
And of course, is fear of the truth really enough to keep a major stakeholder away from social media? Yes, it will be more than simply “surfing the web”, but the results of collecting and investing any new or unusual effects should be considered a plus, not a burden.
When looking at brands and image, one inevitable issue is EUPATI’s relationship with industry. “How do we voice our integrity to the world?” asked Camp. That brought a robust response from Susana Leto di Priolo, Novartis, Italy, who said her company was proud of what it does with special groups, is transparent, and has a code of conduct for its relations with patient organisations. “I have seen the advance of the involvement of patient organisations,” she said, “so I feel offended at comments that patient groups are in the pockets of pharma. Every patient group that is really serious knows how to relate with pharma, and vice versa.”